What Will Trump’s White House Return Mean for Healthcare?

By Stephanie Armour, KFF Health News

Former President Donald Trump’s election victory and looming return to the White House will likely bring changes that scale back the nation’s public health insurance programs — increasing the uninsured rate, while imposing new barriers to abortion and other reproductive care.

The reverberations will be felt far beyond Washington, DC, and could include an erosion of the Affordable Care Act’s consumer protections, the imposition of work requirements in Medicaid and funding cuts to the safety net insurance, and challenges to federal agencies that safeguard public health. Abortion restrictions may tighten nationwide with a possible effort to restrict the mailing of abortion medications.

And with the elevation of vaccine skeptic Robert F. Kennedy Jr. to Trump’s inner circle of advisers, public health interventions with rigorous scientific backing — whether fluoridating public water supplies or inoculating children — could come under fire.

Trump defeated Vice President Kamala Harris with 277 Electoral College votes, The Associated Press declared at 5:34 a.m. ET on Wednesday. He won 51% of the vote nationally to Harris’ 47.5%, the AP projected.

Trump’s victory will give a far broader platform to skeptics and critics of federal health programs and actions. Worst case, public health authorities worry, the U.S. could see increases in preventable illnesses; a weakening of public confidence in established science; and debunked notions — such as a link between vaccines and autism — adopted as policy.

Trump said in an NBC News interview on Nov. 3 that he would “make a decision” about banning some vaccines, saying he would consult with Kennedy and calling him “a very talented guy.”

‘Concepts of a Plan’

While Trump has said he will not try again to repeal the Affordable Care Act, his administration will face an immediate decision next year on whether to back an extension of enhanced premium subsidies for Obamacare insurance plans. Without the enhanced subsidies, steep premium increases causing lower enrollment are projected. The current uninsured rate, about 8%, would almost certainly rise.

Policy specifics have not moved far beyond the “concepts of a plan” Trump said he had during his debate with Harris, though Vice President-elect JD Vance later said the administration would seek to inject more competition into ACA marketplaces.

Republicans were projected to claim a Senate majority, in addition to the White House, while control of the House was not yet resolved early Wednesday.

Polls show the ACA has gained support among the public, including provisions such as preexisting condition protections and allowing young people to stay on family health plans until they are 26.

Trump supporters and others who have worked in his administration say the former president wants to improve the law in ways that will lower costs. They say he has already shown he will be forceful when it comes to lowering high health care prices, pointing to efforts during his presidency to pioneer price transparency in medical costs.

“On affordability, I’d see him building on the first term,” said Brian Blase, who served as a Trump health adviser from 2017 to 2019. Relative to a Democratic administration, he said, there will be “much more focus” on “minimizing fraud and waste.”

Efforts to weaken the ACA could include slashing funds for enrollment outreach, enabling consumers to purchase more health plans that don’t comply with ACA consumer protections, and allowing insurers to charge sicker people higher premiums.

Democrats say they expect the worst.

“We know what their agenda is,” said Leslie Dach, executive chair of Protect Our Care, a health care policy and advocacy organization in Washington, D.C. He worked in the Obama administration helping to implement the ACA. “They’re going to raise costs for millions of Americans and rip coverage away from millions and, meanwhile, they will give tax breaks to rich people.”

Theo Merkel, director of the Private Health Reform Initiative at the right-leaning Paragon Health Institute, which Blase leads, said the enhanced ACA subsidies extended by the Inflation Reduction Act in 2022 do nothing to improve plans or lower premiums. He said they paper over the plans’ low value with larger government subsidies.

Other Trump supporters say the president-elect may support preserving Medicare’s authority to negotiate drug prices, another provision of the IRA. Trump has championed reducing drug prices, and in 2020 advanced a test model that would have tied the prices of some drugs in Medicare to lower costs overseas, said Merkel, who worked in Trump’s first White House. The drug industry successfully sued to block the program.

Within Trump’s circles, some names have already been floated as possible leaders for the Department of Health and Human Services. They include former Louisiana Gov. Bobby Jindal and Seema Verma, who ran the Centers for Medicare & Medicaid Services during the Trump administration.

Kennedy, who suspended his independent presidential run and endorsed Trump, has told his supporters that Trump promised him control of HHS. Trump said publicly before Election Day that he would give Kennedy a big role in his administration, but he may have difficulty winning Senate confirmation for a Cabinet position.

While Trump has vowed to protect Medicare and said he supports funding home care benefits, he’s been less specific about his intentions for Medicaid, which provides coverage to lower-income and disabled people. Some health analysts expect the program will be especially vulnerable to spending cuts, which could help finance the extension of tax breaks that expire at the end of next year.

Possible changes include the imposition of work requirements on beneficiaries in some states. The administration and Republicans in Congress could also try to revamp the way Medicaid is funded. Now, the federal government pays states a variable percentage of program costs. Conservatives have long sought to cap the federal allotments to states, which critics say would lead to draconian cuts.

“Medicaid will be a big target in a Trump administration,” said Larry Levitt, executive vice president for health policy at KFF, a health information nonprofit that includes KFF Health News.

Less clear is the potential future of reproductive health rights.

Trump has said decisions about abortion restrictions should be left to the states. Thirteen states ban abortion with few exceptions, while 28 others restrict the procedure based on gestational duration, according to the Guttmacher Institute, a research and policy organization focused on advancing reproductive rights. Trump said before the election that he would not sign a national abortion ban.

State ballot measures to protect abortion rights were adopted in four states, including Missouri, which Trump won by about 18 points, according to preliminary AP reports. Abortion rights measures were rejected by voters in Florida and South Dakota.

Trump could move to restrict access to abortion medications, used in more than half of abortions, either by withdrawing the FDA’s authorization for the drugs or by enforcing a 19th-century law, the Comstock Act, that abortion opponents say bans their shipment. Trump has said he generally would not use the law to ban mail delivery of the drugs.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

Older Americans Worried About Rising Cost of Healthcare

By Judith Graham, KFF Health News

What weighs most heavily on older adults’ minds when it comes to health care?

The cost of services and therapies, and their ability to pay.

“It’s on our minds a whole lot because of our age and because everything keeps getting more expensive,” said Connie Colyer, 68, of Pleasureville, Kentucky. She’s a retired forklift operator who has lung disease and high blood pressure. Her husband, James, 70, drives a dump truck and has a potentially dangerous irregular heart rhythm.

Tens of millions of seniors are similarly anxious about being able to afford health care because of its expense and rising costs for housing, food, and other essentials.

A new wave of research highlights the reach of these anxieties. When the University of Michigan’s National Poll on Healthy Aging asked people 50 and older about 26 health-related issues, their top three areas of concern had to do with costs: of medical care in general, of long-term care, and of prescription drugs. More than half of 3,300 people surveyed in February and March reported being “very concerned” about these issues.

In fact, five of the top 10 issues identified as very concerning were cost-related. Beyond the top three, people cited the cost of health insurance and Medicare (52%), and the cost of dental care (45%). Financial scams and fraud came in fourth place (53% very concerned). Of much less concern were issues that receive considerable attention, including social isolation, obesity, and age discrimination.

In an election year, “our poll sends a very clear message that older adults are worried about the cost of health care and will be looking to candidates to discuss what they have done or plan to do to contain those costs,” said John Ayanian, director of the University of Michigan’s Institute for Healthcare Policy and Innovation.

Older adults have good reason to worry. One in 10 seniors (about 6 million people) have incomes below the federal poverty level. About 1 in 4 rely exclusively on Social Security payments, which average $1,913 a month per person.

Even though inflation has moderated since its 2022 peak, prices haven’t come down, putting a strain on seniors living on fixed incomes.

Meanwhile, traditional Medicare doesn’t cover several services that millions of older adults need, such as dental care, vision care, or help at home from aides. While private Medicare Advantage plans offer some coverage for these services, benefits are frequently limited.

‘Difficult to Afford Basic Necessities’

All of this contributes to a health care affordability squeeze for older adults. Recently published research from the Commonwealth Fund’s 2023 Health Care Affordability Survey found that nearly a third of people 65 or older reported difficulty paying for health care expenses, including premiums for Medicare, medications, and expenses associated with receiving medical services.

One in 7 older adults reported spending a quarter or more of their average monthly budget on health care; 44% spent between 10% and 24%. Seventeen percent said they or a family member had forgone needed care in the past year for financial reasons.

The Colyers in Pleasureville are among them. Both need new dentures and eyeglasses, but they can’t afford to pay thousands of dollars out-of-pocket, Connie said.

“As the cost of living rises for basic necessities, it’s more difficult for lower-income and middle-income Medicare beneficiaries to afford the health care they need,” said Gretchen Jacobson, vice president of the Medicare program at the Commonwealth Fund. Similarly, “when health care costs rise, it’s more difficult to afford basic necessities.”

This is especially worrisome because older adults are more prone to illness and disability than younger adults, resulting in a greater need for care and higher expenses. In 2022, seniors on Medicare spent $7,000 on medical services, compared with $4,900 for people without Medicare.

Not included in this figure is the cost of assisted living or long-term stays in nursing homes, which Medicare also doesn’t cover. According to Genworth’s latest survey, the median annual cost of a semiprivate room in a nursing home was $104,000 in 2023, while assisted living came to $64,200, and a year’s worth of services from home-health aides cost $75,500.

Many older adults simply can’t afford to pay for these long-term care options or other major medical expenses out-of-pocket.

“Seventeen million older adults have incomes below 200% of the federal poverty level,” said Tricia Neuman, executive director of the Program on Medicare Policy for KFF. (That’s $30,120 for a single-person household in 2024; $40,880 for a two-person household.) “For people living on that income, the risk of a major expense is very scary.”

How to deal with unanticipated expenses in the future is a question that haunts Connie Colyer. Her monthly premiums for Medicare Parts B and D, and a Medigap supplemental policy come to nearly $468, or 42% of her $1,121 monthly income from Social Security.

With a home mortgage of $523 a month, and more than $150 in monthly copayments for her inhalers and her husband’s heart medications, “we wouldn’t make it if my husband wasn’t still working,” she told me.

James’ monthly Social Security payment is $1,378. His premiums are similar to Connie’s and his income fluctuates based on the weather. In the first five months of this year, it approached $10,000, Connie told me.

Many Seniors Reluctant to Ask for Help

The couple makes too much to qualify for programs that help older adults afford Medicare out-of-pocket costs. As many as 6 million people are eligible but not enrolled in these Medicare Savings Programs. Those with very low incomes may also qualify for dual coverage by Medicaid and Medicare or other types of assistance with household costs, such as food stamps.

Older adults can check their eligibility for these and other programs by contacting their local Area Agency on Agency, State Health Insurance Assistance Program, or benefits enrollment center. Enter your ZIP code at the Eldercare Locator and these and other organizations helping seniors locally will come up.

Persuading older adults to step forward and ask for help often isn’t easy. Angela Zeek, health and government benefits manager at Legal Aid of the Bluegrass in Kentucky, said many seniors in her area don’t want to be considered poor or unable to pay their bills, a blow to their pride.

“What we try to say is, ‘You’ve worked hard all your life, you’ve paid your taxes. You’ve given back to this government, so there’s nothing wrong with the government helping you out a bit,’” said Zeek.

And the unfortunate truth is there’s very little, if any, help available for seniors who aren’t poor but have modest financial resources. While the need for new dental, vision, and long-term care benefits for older adults is widely acknowledged, “the question is always how to pay for it,” said Neuman of KFF.

This will become an even bigger issue in the coming years because of the burgeoning aging population.

There is some relief on the horizon, however: Assistance with Medicare drug costs is available through the 2022 Inflation Reduction Act, although many older adults don’t realize it yet. The act allows Medicare to negotiate the price of prescription drugs for the first time. This year, out-of-pocket costs for medications will be limited to a maximum $3,800 for most beneficiaries. Next year, a $2,000 cap on out-of-pocket drug costs will take effect.

“We’re already seeing people who’ve had very high drug costs in the past save thousands of dollars this year,” said Frederic Riccardi, president of the Medicare Rights Center. “And next year, it’s going to get even better.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

FDA and CDC Face Flood of Litigation After Supreme Court Ruling

By Stephanie Armour, KFF Health News

A landmark Supreme Court decision that reins in federal agencies’ authority is expected to hold dramatic consequences for the nation’s health care system, calling into question government rules on anything from consumer protections for patients to drug safety to nursing home care.

The June 28 decision overturns a 1984 precedent that said courts should give deference to federal agencies in legal challenges over their regulatory or scientific decisions. Instead of giving priority to agencies, courts will now exercise their own independent judgment about what Congress intended when drafting a particular law.

The ruling will likely have seismic ramifications for health policy. A flood of litigation — with plaintiffs like small businesses, drugmakers, and hospitals challenging regulations they say aren’t specified in the law — could leave the country with a patchwork of disparate health regulations varying by location.

Agencies such as the FDA are likely to be far more cautious in drafting regulations, Congress is expected to take more time fleshing out legislation to avoid legal challenges, and judges will be more apt to overrule current and future regulations.

Health policy leaders say patients, providers, and health systems should brace for more uncertainty and less stability in the health care system. Even routine government functions such as deciding the rate to pay doctors for treating Medicare beneficiaries could become embroiled in long legal battles that disrupt patient care or strain providers to adapt.

Groups that oppose a regulation could search for and secure partisan judges to roll back agency decision-making, said Andrew Twinamatsiko, director of the Health Policy and the Law Initiative at Georgetown University’s O’Neill Institute. One example could be challenges to the FDA’s approval of a medication used in abortions, which survived a Supreme Court challenge this term on a technicality.

“Judges will be more emboldened to second-guess agencies,” he said. “It’s going to open agencies up to attacks.”

Regulations are effectively the technical instructions for laws written by Congress. Federal agency staffers with knowledge related to a law — say, in drugs that treat rare diseases or health care for seniors — decide how to translate Congress’ words into action with input from industry, advocates, and the public.

Fragmented Health Policy

Up until now, when agencies issued a regulation, a single rule typically applied nationwide. Following the high court ruling, however, lawsuits filed in more than one jurisdiction could result in contradictory rulings and regulatory requirements — meaning health care policies for patients, providers, or insurers could differ greatly from one area to another.

One circuit may uphold a regulation from the Centers for Disease Control and Prevention, for example, while other circuits may take different views.

“You could have eight or nine of 11 different views of the courts,” said William Buzbee, a professor at Georgetown Law.

A court in one circuit could issue a nationwide injunction to enforce its interpretation while another circuit disagrees, said Maura Monaghan, a partner at Debevoise & Plimpton. Few cases are taken up by the U.S. Supreme Court, which could leave clashing directives in place for many years.

In the immediate future, health policy leaders say agencies should brace for more litigation over controversial initiatives. A requirement that most Affordable Care Act health plans cover preventive services, for example, is already being litigated. Multiple challenges to the mandate could mean different coverage requirements for preventive care depending on where a consumer lives.

Drugmakers have sued to try to stop the Biden administration from implementing a federal law that forces makers of the most expensive drugs to negotiate prices with Medicare — a key cog in President Joe Biden’s effort to lower drug prices and control health care costs.

Parts of the health care industry may take on reimbursement rates for doctors that are set by the Centers for Medicare & Medicaid Services because those specific rates aren’t written into law. The agency issues rules updating payment rates in Medicare, a health insurance program for people 65 or older and younger people with disabilities. Groups representing doctors and hospitals regularly flock to Washington, D.C., to lobby against trims to their payment rates.

And providers, including those backed by deep-pocketed investors, have sued to block federal surprise-billing legislation. The No Surprises Act, which passed in 2020 and took effect for most people in 2022, aims to protect patients from unexpected, out-of-network medical bills, especially in emergencies. The high court’s ruling is expected to spur more litigation over its implementation.

“This really is going to create a tectonic change in the administrative regulatory landscape,” Twinamatsiko said. “The approach since 1984 has created stability. When the FDA or CDC adopt regulations, they know those regulations will be respected. That has been taken back.”

Industry groups, including the American Hospital Association and AHIP, an insurers’ trade group, declined to comment.

Agencies such as the FDA that take advantage of their regulatory authority to make specific decisions, such as the granting of exclusive marketing rights upon approval of a drug, will be vulnerable. The reason: Many of their decisions require discretion as opposed to being explicitly defined by federal law, said Joseph Ross, a professor of medicine and public health at Yale School of Medicine.

“The legislation that guides much of the work in the health space, such as FDA and CMS, is not prescriptive,” he said.

In fact, FDA Commissioner Robert Califf said in an episode of the “Healthcare Unfiltered” podcast last year that he was “very worried” about the disruption from judges overruling his agency’s scientific decisions.

The high court’s ruling will be especially significant for the nation’s federal health agencies because their regulations are often complex, creating the opportunity for more pitched legal battles.

Challenges that may not have succeeded in courts because of the deference to agencies could now find more favorable outcomes.

“A whole host of existing regulations could be vulnerable,” said Larry Levitt, executive vice president for health policy at KFF.

Other consequences are possible. Congress may attempt to flesh out more details when drafting legislation to avoid challenges — an approach that may increase partisan standoffs and slow down an already glacial pace in passing legislation, Levitt said.

Agencies are expected to be far more cautious in writing regulations to be sure they don’t go beyond the contours of the law.

The Supreme Court’s 6-3 decision overturned Chevron U.S.A. v. Natural Resources Defense Council, which held that courts should generally back a federal agency’s statutory interpretation as long as it was reasonable. Republicans have largely praised the new ruling as necessary for ensuring agencies don’t overstep their authority, while Democrats said in the aftermath of the decision that it amounts to a judicial power grab.

KFF Health News is a national newsroom that produces in-depth journalism about health issues. 

How Stress, Burnout and Labor Shortages Affect Anesthesia Care

By Pat Anson, PNN Editor

Growing demand for surgical procedures to treat chronic pain and other medical conditions is contributing to shortages of anesthesia care providers, according to an op/ed in Anesthesiology, the journal of the American Society of Anesthesiologists.

"The labor supply-demand imbalance for anesthesia clinicians has reached critical levels, with major implications for safe and effective patient care," says lead author Amr Abouleish, MD, an anesthesiologist and professor at the University of Texas Medical Branch, Galveston.

Many outpatient and elective surgical procedures that were postponed during the Covid-19 pandemic have been rescheduled, leading to a surge in demand that has exacerbated shortages of anesthesia staff. Before the pandemic, about 35% of hospitals and surgical centers reported an anesthesia staffing shortage. Two years after the pandemic, the staffing shortage doubled to 78%.

“But these shortages aren't unique to just anesthesia,” Abouleish told PNN. “We're short nurses, technicians, pharmacists, even aides. And we see that in all our facilities now nationwide.”

Tired of the stress, burnout and workload demands, some providers left healthcare to pursue other professions or retired early. That has contributed to a “dangerous spiral” that has compromised healthcare access and the quality of care. Instead of using general or full anesthesia in an operating room, many outpatient procedures are now performed using partial anesthesia or a local anesthetic, which are cheaper and require less staff.

Abouleish, who specializes in pediatric care, says the staffing shortages haven’t affected patient safety in his practice. But he often finds himself working with someone on a surgery team for the first time.

“The first time we meet the nurse anesthetists is literally the day I’m working with them,” he explained. “When I work with somebody I've worked with for 10 years, we have a rapport. We've developed trust and we understand each other's limits. And that's clearly more effective, better for the team, and better for patients. As long as there is a constant change in staff, I think that's worrisome for patient safety. The surgeons will tell you the same thing.”

Abouleish says the opioid crisis has led to a more multimodal approach to treating chronic pain, which has resulted in more fusions, nerve blocks, spinal injections and other procedures that require some level of anesthesia.

“It's gone from what I saw maybe 10 years ago, before the opioid crisis, where you had physicians or clinics where the only pain management was to hand out opioids. Now it's a multimodal, multidisciplinary approach,” he said.

“There are some patients who do well with a low dose opioid, there's no question about that. But it's also important to have that multi-disciplinary approach to chronic pain. The goal oftentimes is not to take the pain away, it's just to make your everyday life more livable.”

The Center for Anesthesia Workforce Studies estimates that nearly 4,800 anesthesia professionals in the U.S. left the workforce in 2022. The following year, about 5,200 anesthesia professionals entered the workforce from training programs. Although the anesthesia workforce is growing, it’s not growing fast enough to keep pace with demand or attrition. About 57% of anesthesiologists are 55 or older and nearing retirement.

To ease workforce shortages, Abouleish and his co-authors say the number of anesthesiologist residency positions should be increased. Steps should also be taken to improve staff retention by addressing burnout and other workplace issues through more flexible scheduling and part-time work. They also say Medicare payments for anesthesiology services need to increase to keep pace with inflation and higher healthcare costs. 

There’s an App for That

By Barby Ingle, PNN Columnist

Have you noticed that many healthcare companies, medical providers and support groups now have apps for patients?

A recent survey found that about 40% of U.S. adults use healthcare apps and 35% use wearable devices to track their fitness, sleep, diet and other health-related activities. The market for healthcare apps was estimated to be worth $10 billion in 2022 and is expected to grow to $41 billion by 2030.

There are some great “patient-centric” apps. Patient-centric or "person-centered care" means the technology approaches healthcare in a manner that directly involves patients. I have used apps to track my eating, hydration, movement, medications, sleep time and more. Some apps can also help you organize your medical care and recognize issues or changes needed in your medical records.

Patient Portal Apps

The patient portal apps I suggest below are typically set up by the provider, and then the patient can log in and check their records, set up appointments, and access other resources. There are many choices for medical providers to use for patient portals, but these seem to be the ones used the most:  

• HealthTap: This telehealth app connect patients with primary care doctors for online care. Patients can use HealthTap for checkups, prescriptions, lab tests, treatment plans, and specialist referrals. They take patients with and without insurance. Costs start as low as $15 a month, making this affordable for even those without insurance.

• MyChart: This one is my personal favorites and I use it often, as do most of my providers in Arizona. I used MyChart this morning to check on my appointments and to pay an outstanding balance. This app can also give friends and family access to your medical records if you choose. It is excellent for parents to take care of their children and other family members from one account. It will store your medical and lab records, and even some images from MRIs, x-rays, etc. There is transparency in who has accessed your medical records, so you will know which providers have this information.

• FollowMyHealth: This app allows patients to access their medical records, request prescriptions, schedule appointments, and send messages to medical providers and staff. FollowMyHealth can also connect with medical devices such as glucose, heart and blood pressure monitors, and digital scales.

Apps for General Health 

There are many apps for overall general health, with the most popular ones being Headspace, Talkspace, Doctor on Demand, Sleep Cycle, My Fitness Pal, Fooducate, Teladoc, Fitbit, Noom, mySugr, and WebMD.  I have used many of them, but I will focus on my top three:  

• Fitbit: I never considered using a Fitbit watch until I won one from the WEGO Health Awards (now Health Union). I quickly got more involved in tracking my life by using the device. I loved how it could track my movement, sleep and stress levels, and allowed me to put in notes on things such as hydration, migraines and gastrointestinal challenges. I also like Fitbit’s PurePulse, which tracks blood flow and heart rate. FitBit devices range from $80 to $300 each.

• Noom: This is a subscription-based app that helps users track their food intake and exercise. Noom uses psychology to help users develop healthy eating and physical activity habits to lose weight. It takes a lot of dedication and focus to use Noom successfully. I lost over 20 pounds using it. I am not very active physically, and they considered that in developing an individualized program for me as a chronic pain and rare disease patient. The app encourages you to think about food differently and change your eating habits so your body works better for you. The average subscription is $60 monthly.  

• Sleep Cycle: This app tracks and analyzes your sleeping patterns. It was helpful for me to take sleep data from the app to my primary care provider so he could better understand why I have trouble sleeping. I do not sleep consistently through the night, especially on high-pain days. It’s a good tool to figure out why you are struggling to sleep and how pain is affecting your internal clock or waking you up. The Sleep Cycle app is free to download, but a premium subscription costs $40 per year. I used the free accessible portions of the app at no cost.

Chronic Pain Apps

There are many apps that can help a patient track their pain levels, types of pain, whether treatment options are helping or hurting, and more. I used to do this the old-fashioned way with a journal, but having digital data to break it down scientifically for my providers was helpful once I started using pain-tracking apps. I have tried a few and heard others find them helpful as well.  

• PainChek: This app uses artificial intelligence (AI) and facial expressions to assess pain in people who cannot reliably communicate their pain levels, such as those with dementia or young children. PainChek uses a smartphone camera to analyze a person's face. The AI system then automatically recognizes and documents facial movements that indicate pain. It’s more of an objective tool for me, since I can speak about my pain, but for those who are voiceless, it could help their daily life and individualize their care. 

• Vivify:  This is a 28-day program for people with chronic back or neck pain that includes pain education, meditation, exercises, and guided walks through an app or website connection. Vivify also monitors patients remotely, allowing providers to create and manage wellness programs for their patients. Although the goal is to “overcome or remove chronic pain entirely,” I see this app as more of a tool for people to assist in their daily activities and motivate them to move.

• My Pain Diary:  This pain-tracking app reminds me of when I used to manually keep track of my pain before apps were available. It gives patients a way to document and track their pain triggers and symptoms. You can also use the data to print detailed reports that are easy to share with your providers. I like the color-coded calendar, graphs and searchable history. The app looks at the data and sees trends you may not notice yourself. The Gold Edition of My Pain Diary costs just $5.

• PainScale: This app was recommended to me by a friend. PainScale is made by Boston Scientific and helps users track their pain, suggests treatment options, and generate reports to providers. It can also provide information from the Mayo Clinic, WebMD and other trusted pain resources to help patients manage chronic pain triggers. This app is free to download.  

The apps mentioned above are some of the most used and trusted apps by patients and providers. Patient-centric apps have become an essential part of the healthcare industry. As technology and AI continue to advance, we can expect to see more of these innovative patient apps in the future.

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and the founder and former President of the International Pain Foundation. You can follow Barby at www.barbyingle.com. 

U.S. Healthcare System Isn’t Ready for Surge of Disabled Seniors

By Judith Graham, KFF Health News

The number of older adults with disabilities — difficulty with walking, seeing, hearing, memory, cognition, or performing daily tasks such as bathing or using the bathroom — will soar in the decades ahead, as baby boomers enter their 70s, 80s, and 90s.

But the health care system isn’t ready to address their needs.

That became painfully obvious during the covid-19 pandemic, when older adults with disabilities had trouble getting treatments and hundreds of thousands died. Now, the Department of Health and Human Services and the National Institutes of Health are targeting some failures that led to those problems.

One initiative strengthens access to medical treatments, equipment, and web-based programs for people with disabilities. The other recognizes that people with disabilities, including older adults, are a separate population with special health concerns that need more research and attention.

Lisa Iezzoni, 69, a professor at Harvard Medical School who has lived with multiple sclerosis since her early 20s and is widely considered the godmother of research on disability, called the developments “an important attempt to make health care more equitable for people with disabilities.”

“For too long, medical providers have failed to address change in society, changes in technology, and changes in the kind of assistance that people need,” she said.

Among Iezzoni’s notable findings published in recent years:

Most doctors are biased: In survey results published in 2021, 82% of physicians admitted they believed people with significant disabilities have a worse quality of life than those without impairments. Only 57% said they welcomed disabled patients.

“It’s shocking that so many physicians say they don’t want to care for these patients,” said Eric Campbell, a co-author of the study and professor of medicine at the University of Colorado.

While the findings apply to disabled people of all ages, a larger proportion of older adults live with disabilities than younger age groups. About one-third of people 65 and older — nearly 19 million seniors — have a disability, according to the Institute on Disability at the University of New Hampshire.

Doctors don’t understand their responsibilities: In 2022, Iezzoni, Campbell, and colleagues reported that 36% of physicians had little to no knowledge of their responsibilities under the 1990 Americans With Disabilities Act, indicating a concerning lack of training. The ADA requires medical practices to provide equal access to people with disabilities and accommodate disability-related needs.

Among the practical consequences: Few clinics have height-adjustable tables or mechanical lifts that enable people who are frail or use wheelchairs to receive thorough medical examinations. Only a small number have scales to weigh patients in wheelchairs. And most diagnostic imaging equipment can’t be used by people with serious mobility limitations.

Iezzoni has experienced these issues directly. She relies on a wheelchair and can’t transfer to a fixed-height exam table. She told me she hasn’t been weighed in years.

Among the medical consequences: People with disabilities receive less preventive care and suffer from poorer health than other people, as well as more coexisting medical conditions. Physicians too often rely on incomplete information in making recommendations. There are more barriers to treatment and patients are less satisfied with the care they do get.

Discrimination in Healthcare

Egregiously, during the pandemic, when crisis standards of care were developed, people with disabilities and older adults were deemed low priorities. These standards were meant to ration care, when necessary, given shortages of respirators and other potentially lifesaving interventions.

There’s no starker example of the deleterious confluence of bias against seniors and people with disabilities. Unfortunately, older adults with disabilities routinely encounter these twinned types of discrimination when seeking medical care.

Such discrimination would be explicitly banned under a rule proposed by HHS in September. For the first time in 50 years, it would update Section 504 of the Rehabilitation Act of 1973, a landmark statute that helped establish civil rights for people with disabilities.

The new rule sets specific, enforceable standards for accessible equipment, including exam tables, scales, and diagnostic equipment. And it requires that electronic medical records, medical apps, and websites be made usable for people with various impairments and prohibits treatment policies based on stereotypes about people with disabilities, such as covid-era crisis standards of care.

“This will make a really big difference to disabled people of all ages, especially older adults,” said Alison Barkoff, who heads the HHS Administration for Community Living. She expects the rule to be finalized this year, with provisions related to medical equipment going into effect in 2026. Medical providers will bear extra costs associated with compliance.

Also in September, NIH designated people with disabilities as a population with health disparities that deserves further attention. This makes a new funding stream available and “should spur data collection that allows us to look with greater precision at the barriers and structural issues that have held people with disabilities back,” said Bonnielin Swenor, director of the Johns Hopkins University Disability Health Research Center.

One important barrier for older adults: Unlike younger adults with disabilities, many seniors with impairments don’t identify themselves as disabled.

“Before my mom died in October 2019, she became blind from macular degeneration and deaf from hereditary hearing loss. But she would never say she was disabled,” Iezzoni said.

Similarly, older adults who can’t walk after a stroke or because of severe osteoarthritis generally think of themselves as having a medical condition, not a disability.

Meanwhile, seniors haven’t been well integrated into the disability rights movement, which has been led by young and middle-aged adults. They typically don’t join disability-oriented communities that offer support from people with similar experiences. And they don’t ask for accommodations they might be entitled to under the ADA or the 1973 Rehabilitation Act.

Many seniors don’t even realize they have rights under these laws, Swenor said. “We need to think more inclusively about people with disabilities and ensure that older adults are fully included at this really important moment of change.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

It’s Not Urgent and They Don’t Care

By Mia Maysack, PNN Columnist

There are no words to convey the extent that I, along with so many others, have endured medical trauma. It’s even more impossible for us to get those who haven't to understand what it's like or the toll that it takes.

A loved one of mine had an injury not too long ago that required a small dose of medical hoop jumping. Just the tip of the broken-healthcare-system-iceberg was enough to leave a lasting impression on them, to the extent they still haven't stopped complaining about it.

But when I attempted to express my own fresh experience with said iceberg, this same person described me as "too sensitive." That is dreadfully inaccurate, especially when you consider I've lived this way for over two decades and they had one adverse experience.

My aim is not to belittle or attempt competitive victimization. I understand how health problems impact us on different levels and in various ways. I simply find the lack of empathy -- yet the simultaneous expectation of it -- to be painfully fascinating.

Within the last few weeks, I've been hospitalized multiple times, essentially back-to-back for the same issue. That's part of what being chronically ill looks like. The difference between these recent visits, as opposed to all the others, is the spite I feel for providers who are supposed to be working for me.

I currently don’t have a primary care provider, so my only option when I have an urgent need is to go to a hospital emergency department. I was in one recently at two o’clock in the morning, freezing on a cot in an isolated exam room.

A nurse came in for the rundown as to why I was there, followed by a brief appearance from a doctor who didn't make eye contact or even face me. He kept his back turned while working on a computer.

The nurse proceeded to speak about me and my situation with Doctor Awesome, as if I was not even there. I interrupted their conversation, because I’ve already endured enough lack of bedside manner and respectfully expressed my concerns and wishes.  I asked for an exam and tests to ensure my medical issue wasn’t progressing, I also needed a prescription to relieve side effects from a medicine I was taking to manage my complications.

After laying all this out in a concise, professional manner, Dr. Awesome finally decides to turn around to face me and dryly asks, “So what brings you in tonight?”

Stunned, I politely responded that I’d previously been to this ER and was advised to return if needed. His reply was that my requests are more of a “clinic thing” and “weren’t necessary.” He then dismissed himself and I did not see him again for the hours I was left alone there. He did not come back to check on me before discharge or bother to report the results of my testing. No one did.

An assistant I hadn’t seen before eventually popped in and provided more warmth than anyone else I’d encountered, just by saying, “Awww, you do not look like you feel very well.” 

I thanked her for the acknowledgement and asked for an exam from anybody who was qualified -- it certainly didn’t need to be Dr. Awesome. She was appalled that I had to ask and left promptly to flag someone down.

So now another person I had never met and who didn’t bother introducing themselves, came in and spent less than a minute with me before they left.

At a different point in my journey, this sort of encounter would’ve completely shattered me, because of how low and how long I’ve been knocked down by those entrusted to aid in healing

Those days are over. Today, I’ll stop at nothing to pursue and obtain what’s in my best interests. Instead of feeling depleted after mistreatment like this, I internalize it as empowerment. I’ve made the decision to give up on them instead of myself, and to continue battling for the sake of my life quality. Even if that means fighting against the harm that they vowed not to inflict in the first place. 

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

How Technology Could Improve Healthcare in Underserved Communities

By Barby Ingle, PNN Columnist 

This year I was fortunate to visit all 15 counties in Arizona, from large cities and rural areas to those considered “frontier” and tribal reservations. I talked to patients, providers and caregivers about the stress points in their access to healthcare. I was in towns with no EMS, no hospital, and no specialists.

Seeing these disparities in healthcare closeup was an eye-opener for me. Imagine being injured or needing surgery, and you must take a helicopter to get immediate care. It’s like living on another planet.  

We can ensure that underserved communities have equal access to healthcare services, regardless of location, by providing remote and rural areas with access to telemedicine. Although the ability to access the internet is still difficult in some areas, services like Elon Musk's Star Link are being utilized to improve healthcare no matter where you live. 

With the recent pandemic, we were able to utilize telemedicine more often and see advancements in digital health solutions. Healthcare professionals can now remotely diagnose, treat and monitor patients from a distance. But will relaxed telehealth rules continue in the same form now that the pandemic has ended? Many of the details are still being worked out.

Mobile applications and wearable devices enable patients to monitor their vital signs and share the data with providers, allowing for remote monitoring and proactive intervention. They can also empower patients to more closely monitor their own health, receive medical advice, and manage chronic conditions from their homes.

With the increased availability of internet connectivity and mobile networks, technology has the potential to revolutionize healthcare delivery and improve health outcomes in remote and underserved regions. Several steps can be taken to address the digital divide in healthcare between urban and rural areas.

First, it is crucial to educate individuals about the benefits of technology and digital health tools. Technology can reduce transportation barriers, provide on-demand health advice, and minimize the risk of exposure to infectious diseases by enabling patients to stay at home.

Second, partnerships between stakeholders, such as academia, the private sector and government can help narrow the digital divide by leveraging resources to place healthcare technology where it is most needed. By building awareness, partnerships and targeting resources, it will be possible to bridge the digital divide and ensure that all communities have access to healthcare technology.

Here are some specific steps that can be taken:

• Conduct a comprehensive needs assessment in underserved communities to understand their unique healthcare challenges, cultural context and technological requirements. A needs assessment can involve surveys, interviews and focus group discussions with community members, healthcare providers and other stakeholders.

• Engage community members, healthcare professionals, and technology experts in a co-design approach. This means collaborating with the community to design and develop healthcare technology solutions that align with its needs, preferences and capabilities.  

• Adopt a user-centered design approach to make sure healthcare technology is user friendly.  Involve people from underserved communities in testing and interface design to ensure the technology is accessible, culturally appropriate and easy to operate.

• Consider the affordability and sustainability of healthcare technology by addressing cost barriers. ensuring compatibility with low-resource settings, and developing tools that can operate with limited infrastructure or connectivity.

• Provide training and support for people to utilize healthcare technology effectively. The training should include digital literacy programs, capacity-building workshops, and ongoing technical assistance.  

By involving underserved communities in the design process, healthcare technology can be tailored to their specific needs, leading to increased adoption and improved healthcare outcomes. It is crucial to prioritize the needs of these communities to ensure that they are included in the design and development of healthcare technology. By doing so, we can create more effective and sustainable solutions that genuinely address the healthcare challenges faced by underserved communities.

I am grateful for the opportunity to talk to patients, providers and caregivers in Arizona, thanks to a grant from HealtheVoices, Respond & Rescue, KB Companies and the International Pain Foundation. I look forward to continuing to gather feedback from underserved communities nationwide. By listening to patients and understanding their unique healthcare challenges, we can work towards creating meaningful solutions that improve access to care and overall health outcomes. 

Barby Ingle is a reality TV personality living with multiple rare and chronic diseases. She is a chronic pain educator, patient advocate, motivational speaker, and best-selling author on pain topics. You can follow Barby at www.barbyingle.com. 

ChatGPT Is Replacing Dr. Google

By Andrew Leonard, KFF Health News

As a fourth-year ophthalmology resident at Emory University School of Medicine, Riley Lyons’ biggest responsibilities include triage: When a patient comes in with an eye-related complaint, Lyons must make an immediate assessment of its urgency.

He often finds patients have already turned to “Dr. Google.” Online, Lyons said, they are likely to find that “any number of terrible things could be going on based on the symptoms that they’re experiencing.”

So, when two of Lyons’ fellow ophthalmologists at Emory came to him and suggested evaluating the accuracy of the AI chatbot ChatGPT in diagnosing eye-related complaints, he jumped at the chance.

In June, Lyons and his colleagues reported in medRxiv, an online publisher of health science preprints, that ChatGPT compared quite well to human doctors who reviewed the same symptoms — and performed vastly better than the symptom checker on the popular health website WebMD.

And despite the much-publicized “hallucination” problem known to afflict ChatGPT — its habit of occasionally making outright false statements — the Emory study reported that the most recent version of ChatGPT made zero “grossly inaccurate” statements when presented with a standard set of eye complaints.

The relative proficiency of ChatGPT, which debuted in November 2022, was a surprise to Lyons and his co-authors. The artificial intelligence engine “is definitely an improvement over just putting something into a Google search bar and seeing what you find,” said co-author Nieraj Jain, an assistant professor at the Emory Eye Center who specializes in vitreoretinal surgery and disease.

But the findings underscore a challenge facing the health care industry as it assesses the promise and pitfalls of generative AI, the type of artificial intelligence used by ChatGPT: The accuracy of chatbot-delivered medical information may represent an improvement over Dr. Google, but there are still many questions about how to integrate this new technology into health care systems with the same safeguards historically applied to the introduction of new drugs or medical devices.

The smooth syntax, authoritative tone, and dexterity of generative AI have drawn extraordinary attention from all sectors of society, with some comparing its future impact to that of the internet itself. In health care, companies are working feverishly to implement generative AI in areas such as radiology and medical records.

When it comes to consumer chatbots, though, there is still caution, even though the technology is already widely available — and better than many alternatives. Many doctors believe AI-based medical tools should undergo an approval process similar to the FDA’s regime for drugs, but that would be years away. It’s unclear how such a regime might apply to general-purpose AIs like ChatGPT.

“There’s no question we have issues with access to care, and whether or not it is a good idea to deploy ChatGPT to cover the holes or fill the gaps in access, it’s going to happen and it’s happening already,” said Jain. “People have already discovered its utility. So, we need to understand the potential advantages and the pitfalls.”

The Emory study is not alone in ratifying the relative accuracy of the new generation of AI chatbots. A report published in Nature in early July by a group led by Google computer scientists said answers generated by Med-PaLM, an AI chatbot the company built specifically for medical use, “compare favorably with answers given by clinicians.”

AI may also have better bedside manner. Another study, published in April by researchers from the University of California-San Diego and other institutions, even noted that health care professionals rated ChatGPT answers as more empathetic than responses from human doctors.

Indeed, a number of companies are exploring how chatbots could be used for mental health therapy, and some investors in the companies are betting that healthy people might also enjoy chatting and even bonding with an AI “friend.” The company behind Replika, one of the most advanced of that genre, markets its chatbot as, “The AI companion who cares. Always here to listen and talk. Always on your side.”

“We need physicians to start realizing that these new tools are here to stay and they’re offering new capabilities both to physicians and patients,” said James Benoit, an AI consultant. While a postdoctoral fellow in nursing at the University of Alberta in Canada, he published a study in February reporting that ChatGPT significantly outperformed online symptom checkers in evaluating a set of medical scenarios. “They are accurate enough at this point to start meriting some consideration,” he said.

A ’Band-Aid’ Solution

Still, even the researchers who have demonstrated ChatGPT’s relative reliability are cautious about recommending that patients put their full trust in the current state of AI. For many medical professionals, AI chatbots are an invitation to trouble: They cite a host of issues relating to privacy, safety, bias, liability, transparency, and the current absence of regulatory oversight.

The proposition that AI should be embraced because it represents a marginal improvement over Dr. Google is unconvincing, these critics say.

“That’s a little bit of a disappointing bar to set, isn’t it?” said Mason Marks, a professor and MD who specializes in health law at Florida State University. He recently wrote an opinion piece on AI chatbots and privacy in the Journal of the American Medical Association.

“I don’t know how helpful it is to say, ‘Well, let’s just throw this conversational AI on as a band-aid to make up for these deeper systemic issues,’” he said to KFF Health News.

The biggest danger, in his view, is the likelihood that market incentives will result in AI interfaces designed to steer patients to particular drugs or medical services. “Companies might want to push a particular product over another,” said Marks. “The potential for exploitation of people and the commercialization of data is unprecedented.”

OpenAI, the company that developed ChatGPT, also urged caution.

“OpenAI’s models are not fine-tuned to provide medical information,” a company spokesperson said. “You should never use our models to provide diagnostic or treatment services for serious medical conditions.”

John Ayers, a computational epidemiologist who was the lead author of the UCSD study, said that as with other medical interventions, the focus should be on patient outcomes.

“If regulators came out and said that if you want to provide patient services using a chatbot, you have to demonstrate that chatbots improve patient outcomes, then randomized controlled trials would be registered tomorrow for a host of outcomes,” Ayers said.

He would like to see a more urgent stance from regulators.

“One hundred million people have ChatGPT on their phone,” said Ayers, “and are asking questions right now. People are going to use chatbots with or without us.”

At present, though, there are few signs that rigorous testing of AIs for safety and effectiveness is imminent. In May, Robert Califf, the commissioner of the FDA, described “the regulation of large language models as critical to our future,” but aside from recommending that regulators be “nimble” in their approach, he offered few details.

In the meantime, the race is on. In July, The Wall Street Journal reported that the Mayo Clinic was partnering with Google to integrate the Med-PaLM 2 chatbot into its system. In June, WebMD announced it was partnering with a Pasadena, California-based startup, HIA Technologies Inc., to provide interactive “digital health assistants.” And the ongoing integration of AI into both Microsoft’s Bing and Google Search suggests that Dr. Google is already well on its way to being replaced by Dr. Chatbot.

KFF Health News is a national newsroom that produces in-depth journalism about health issues.

The Healthcare System Is Sick, How Could It Ever Heal Us?

By Mia Maysack, PNN Columnist

As a person who has required ample medical attention throughout my life, a constant part of the never-ending struggle for treatment is finding a provider that’s worth-a-damn to administer quality healthcare.

In childhood, I was fortunate to have one practitioner who treated every member of my family. Although most of it was an excruciating trial and error process, I can at least say they tried. When she retired, for continuity’s sake I gravitated toward someone else in the same medical practice.

By then my initial condition (chronic head pain) had not only become more complicated, but I was also battling another diagnosis (fibromyalgia) -- one that the new provider did not seem to take seriously. I chose to dismiss myself from the practice.

At that point, I became more conscious about the sort of doctor I was seeking, so I spent hours researching every clinic in my surrounding area and reviewing doctors’ bios. It was imperative that whoever I chose possess some sort of background or special interest in pain. 

I found a candidate I was so excited about that I left in happy tears after the first appointment. Unfortunately, that did not last long. On the next visit, I was diagnosed with my second round of Covid-19 and they proceeded to blame my chronic fatigue, joint pain and compromised mobility on the coronavirus -- as opposed to the fibromyalgia I’d already been diagnosed with years before the pandemic.

I shrugged it off as a misunderstanding, and assumed they must have meant the exacerbation of my fibromyalgia symptoms was caused by Covid.  

At appointment number three, we discussed preventative screenings due to some issues relating to potential hereditary concerns. After some urging, they explained the process of going in for testing, assured me I’d be contacted by qualified personnel, and guaranteed that I’d receive a direct message from them personally once all this was set in motion.

My only job was to wait, so I did. And I continued to wait. A month later, I’m still waiting.

Of course, I realize I’m not the only patient in the universe. As a retired healthcare worker, I understand the burnout so many providers must be experiencing after the last 3 years.  I recognize the shortages and feel privileged to have any sort of access. That being said, over the last two months at least two members of the pain community have taken their own lives. This is an example of what led them there. 

I vowed this was going to be the final disappointment that I am willing to accept from the healthcare system. I am paying more for medical insurance than I ever have, but receive the least amount of aid.

Given that previous failures are what led me to explore more holistic methods, I do not reside in woo-woo land. Concepts like breath work and herbs felt a bit degrading and insulting at first, but then I decided to set my reluctance aside, remembering how lost just about everything I tried up to then had left me. I reflected on the fact that I almost didn’t survive long enough to even consider something different. 

I’d never suggest that natural treatments will cure whatever horrendous illness a person may be enduring, but I’ll point out that many holistic remedies go back thousands of years. Ideas that were once dismissed, such as gut health being correlated to mental well-being; inflammation being the main culprit in overall sickness; oral hygiene (or lack thereof) directly impacting the heart; and how exercise improves mood and health are now widely accepted as mainstream.

Some of these ideas have gained traction, but utilizing things like plants won’t ever be fully encouraged or supported because it takes money away from Big Pharma – which ironically produces medication that is often derived from natural sources as well.

All of this is an open invitation to explore different ways to care for ourselves. We can remain distraught over our lack of support or we can be empowered by seeking out what we can do, as opposed to what they’ll “allow.”

I don't know about you, but continuing to put the quality of my life in the hands of those who repeatedly demonstrate their lack of concern and who are in the business of profiting off sickness is a death wish. The healthcare system is not only guilty of this, but sick itself. How could it ever heal us?

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill. 

Nearly Half of Adults Think U.S. Healthcare System Is Failing

By Pat Anson, PNN Editor

Almost half of American adults (44%) give the U.S. healthcare system poor or failing grades, according to a new Gallup survey that found most respondents concerned about rising medical costs and growing healthcare inequality. Overall, the healthcare system was given a barely passing grade of C-minus.

"After years of higher prices, growing inequities, skipping treatments, getting sicker, or borrowing money to pay medical bills, it's no wonder so many Americans view the health system so poorly," said Timothy Lash, President of West Health, a group of healthcare non-profits that commissioned the survey.

The survey of nearly 5,600 Americans in all 50 states was conducted in June, with a nationally representative sample reflecting racial and ethnic backgrounds.

The worst overall grade on the healthcare report card – a D-minus – was given to the cost of care. One in four adults (26%) did not seek treatment due to cost in the last three months; while one in three (35%) are concerned they will be unable to afford healthcare in the next 12 months.  

Healthcare in America Report Card

source: west health-Gallup

The affordability issue is worse for those living with chronic health conditions. About 1 in 5 skipped care to pay for other household expenses, compared to about one in eight of those without chronic conditions.

“When members of my family have needed surgeries or medications [they] have to really consider how much medical debt they’re willing to go into. Our healthcare system forces us to try and make calculations between financial security and health just because of how expensive things are, and that’s even with health insurance, so I can’t imagine if you didn’t have health insurance how fraught that would be,” said survey participant Stef Schloo, 28, who lives in Pennsylvania

“I am single and so all of that falls down on me. And the only thing that would concern me is if I really developed a major health situation or, God forbid, if I was in a major accident or had to have long-term care, that’s a great concern to me,” said Patricia Slough, 67, who lives in Massachusetts.

Quality of care was the only aspect of the healthcare system that received more positive than negative marks, although it was still only able to earn an overall grade of C-plus. Women were less likely to give good grades for quality than men (38% vs. 57%); and Black and Hispanic Americans were also less likely to give a good grade for quality than the general population (36% each vs. 47%).

“You can have some of the best doctors in the world practicing here. I’m not saying that other countries don’t have great doctors, but I think our healthcare professionals can be second to none depending on where you go in America,” said Andrew Kerner, 30, who lives in North Carolina.

Healthcare Access and Equity

The grades for access to care and equitable care also broke down along racial lines. Two-thirds of Black Americans (66%) and Asian Americans (64%) selected a grade of D or F for health equity, which is the ability of every person to get quality care regardless of race and ethnicity. By comparison, Hispanic Americans (55%) and White Americans (53%) gave a poor or failing grade to equity,

Women, Blacks, Hispanics and Asian Americans were also more critical when it came to access to care. More than 40% in each of these groups gave access D’s and F’s, compared to about a third of White Americans and men.

“For the richest country on earth I think we have the most deplorable healthcare system... due to its inequity, mainly due to the way it all depends on how much money somebody has whether they get good healthcare or not,” said Anne Courtney Davis, 71, who lives in Ohio.

The survey also found that most younger and middle-aged adults are worried that Medicare and Social Security will not be available to them when they become eligible. That sentiment cuts across political lines, with 71% of Democrats, 66% of independents and 62% of Republicans worried or extremely worried about not having access to Medicare. When it comes to Social Security, there is even more agreement — 77% of Democrats, 75% of independents and 73% of Republicans are worried it won’t be there for them when they grow older.

Under an 11-point plan by Sen. Rick Scott (R-FL), chair of the National Republican Senatorial Committee, funding for Social Security, Medicare and other so-called entitlements would have to be put to a vote in Congress every five years.

“When I witness these individuals say that Medicare should be renewed every five years, it kind of makes me nervous [it’s] not going to be there for individuals when we get older,” said Nick Lembo, 27, of Indiana. “That’s startling to me because you should want to take care of those who are older than you because eventually... you’re going to be at that age.”

Ageism in Healthcare: ‘They Treat Me Like I’m Old and Stupid’

By Judith Graham, Kaiser Health News

Joanne Whitney, 84, a retired associate clinical professor of pharmacy at the University of California-San Francisco, often feels devalued when interacting with health care providers.

There was the time several years ago when she told an emergency room doctor that the antibiotic he wanted to prescribe wouldn’t counteract the kind of urinary tract infection she had. He wouldn’t listen, even when she mentioned her professional credentials. She asked to see someone else, to no avail.

“I was ignored and finally I gave up,” said Whitney, who has survived lung cancer and cancer of the urethra and depends on a special catheter to drain urine from her bladder. An outpatient renal service later changed the prescription.

Then, earlier this year, Whitney landed in the same emergency room, screaming in pain, with another urinary tract infection and a severe anal fissure. When she asked for Dilaudid, a powerful narcotic that had helped her before, a young physician told her, “We don’t give out opioids to people who seek them. Let’s just see what Tylenol does.”

Whitney said her pain continued unabated for eight hours.

“I think the fact I was a woman of 84, alone, was important,” she told me. “When older people come in like that, they don’t get the same level of commitment to do something to rectify the situation. It’s like ‘Oh, here’s an old person with pain. Well, that happens a lot to older people.’”

Whitney’s experiences speak to ageism in health care settings, a long-standing problem that’s getting new attention during the covid pandemic, which has killed more than half a million Americans age 65 and older.

Ageism occurs when people face stereotypes, prejudice or discrimination because of their age. The assumption that all older people are frail and helpless is a common, incorrect stereotype. Prejudice can consist of feelings such as “older people are unpleasant and difficult to deal with.” Discrimination is evident when older adults’ needs aren’t recognized and respected or when they’re treated less favorably than younger people.

In health care settings, ageism can be explicit. An example: plans for rationing medical care (“crisis standards of care”) that specify treating younger adults before older adults. Embedded in these standards, now being implemented by hospitals in Idaho and parts of Alaska and Montana, is a value judgment: Young peoples’ lives are worth more because they presumably have more years left to live.

Justice in Aging, a legal advocacy group, filed a civil rights complaint with the U.S. Department of Health and Human Services in September, charging that Idaho’s crisis standards of care are ageist and asking for an investigation.

‘They Don’t Respect You’

In other instances, ageism is implicit. Dr. Julie Silverstein, president of the Atlantic division of Oak Street Health, which operates more than 100 primary care centers for low-income seniors in 18 states, gives an example of ageism: doctors assuming older patients who talk slowly are cognitively compromised and unable to relate their medical concerns. If that happens, a physician may fail to involve a patient in medical decision-making, potentially compromising care, Silverstein said.

Emogene Stamper, 91, of the Bronx in New York City, was sent to an under-resourced nursing home after becoming ill with covid in March. “It was like a dungeon,” she remembered, “and they didn’t lift a finger to do a thing for me.” The assumption that older people aren’t resilient and can’t recover from illness is implicitly ageist.

Stamper’s son fought to have his mother admitted to an inpatient rehabilitation hospital where she could receive intensive therapy. “When I got there, the doctor said to my son, ‘Oh, your mother is 90,’ like he was kind of surprised, and my son said, “You don’t know my mother. You don’t know this 90-year-old,” Stamper told me. “That lets you know how disposable they feel you are once you become a certain age.”

At the end of the summer, when Stamper was hospitalized for an abdominal problem, a nurse and nursing assistant came to her room with papers for her to sign. “Oh, you can write!” Stamper said the nurse exclaimed loudly when she penned her signature. “They were so shocked that I was alert, it was insulting. They don’t respect you.”

Nearly 20% of Americans age 50 and older say they have experienced discrimination in health care settings, which can result in inappropriate or inadequate care, according to a 2015 report. One study estimates that the annual health cost of ageism in America, including over- and undertreatment of common medical conditions, totals $63 billion.

Nubia Escobar, 75, who emigrated from Colombia nearly 50 years ago, wishes doctors would spend more time listening to older patients’ concerns. This became an urgent issue two years ago when her longtime cardiologist in New York City retired to Florida and a new physician had trouble controlling her hypertension.

Alarmed that she might faint or fall because her blood pressure was so low, Escobar sought a second opinion. That cardiologist “rushed me — he didn’t ask many questions and he didn’t listen. He was sitting there talking to and looking at my daughter,” she said.

It was Veronica Escobar, an elder law attorney, who accompanied her mother to that appointment. She remembers the doctor being abrupt and constantly interrupting her mother. “I didn’t like how he treated her, and I could see the anger on my mother’s face,” she told me. Nubia Escobar has since seen a geriatrician who concluded she was overmedicated.

The geriatrician “was patient,” Nubia Escobar told me. “How can I put it? She gave me the feeling she was thinking all the time what could be better for me.”

Pat Bailey, 63, gets little of that kind of consideration in the Los Angeles County, California, nursing home where she’s lived for five years since having a massive stroke and several subsequent heart attacks.

“When I ask questions, they treat me like I’m old and stupid and they don’t answer,” she told me in a telephone conversation

“When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill.”

— Nursing home resident

One nursing home resident in every five has persistent pain, studies have found, and a significant number don’t get adequate treatment. Bailey, whose left side is paralyzed, said she’s among them. “When I tell them what hurts, they just ignore it or tell me it’s not time for a pain pill,” she complained.

Most of the time, Bailey feels like “I’m invisible” and like she’s seen as “a slug in a bed, not a real person.” Only one nurse regularly talks to her and makes her feel she cares about Bailey’s well-being.

“Just because I’m not walking and doing anything for myself doesn’t mean I’m not alive. I’m dying inside, but I’m still alive,” she told me.

Ed Palent, 88, and his wife, Sandy, 89, of Denver, similarly felt discouraged when they saw a new doctor after their long-standing physician retired. “They went for an annual checkup and all this doctor wanted them to do was ask about how they wanted to die and get them to sign all kinds of forms,” said their daughter Shelli Bischoff, who discussed her parents’ experiences with their permission.

“They were very upset and told him, ‘We don’t want to talk about this,’ but he wouldn’t let up. They wanted a doctor who would help them live, not figure out how they’re going to die.”

The Palents didn’t return and instead joined another medical practice, where a young doctor barely looked at them after conducting cursory examinations, they said. That physician failed to identify a dangerous staphylococcus bacterial infection on Ed’s arm, which was later diagnosed by a dermatologist. Again, the couple felt overlooked, and they left.

Now they’re with a concierge physician’s practice that has made a sustained effort to get to know them. “It’s the opposite of ageism: It’s ‘We care about you and our job is to help you be as healthy as possible for as long as possible,’” Bischoff said. “It’s a shame this is so hard to find.”

Kaiser Health News is a national newsroom that produces in-depth journalism about health issues.

Why President Biden Must Act on Stem Cells

By A. Rahman Ford, PNN Columnist

In a recent Forbes article, Jake Becraft argues that biomedical manufacturing must receive similar federal investment as technology infrastructure if all Americans are to have equitable access to emerging medical technologies like stem cell therapy.

Becraft notes that -- unlike the rollout of 5G wireless technology, which received substantial public and private investment -- healthcare distribution bottlenecks have received much less attention.

 “If 70% of Americans should have access to 5G, why shouldn’t they also have access to live-saving therapeutics?” asks Becraft, who is the founder and CEO of Strand Therapeutics. “What good is gene therapy to cure blindness if only those with an extra $850,000 in their pocket and home near an urban center can access it?

“If we invest in the fair and equitable distribution of life-saving therapeutics across the country, and not just in the medical hubs of major cities, we could make cell and gene therapies as accessible as we have aimed to make 5G. Cures shouldn’t exist only for the privileged.”

For Becraft, true next-generation health access requires a revolutionizing and re-imagining of healthcare manufacturing and delivery, which would consequently speed the development of cell therapies.

A Broken Stem Cell Infrastructure

Becraft’s argument cuts to the heart of the stem cell accessibility divide, which is especially true with regard to autologous stem cells that are derived from a patient’s own body fat, bone marrow and other tissues.

Harvesting, processing and administering autologous stem cells is relatively simple, cheap and can be done in one day.  Clinicians around the world have been using these therapies to treat or even cure autoimmune diseases and orthopedic problems that are often poorly treated with conventional medical modalities,

But autologous stem cells are currently heavily regulated in the U.S. because the Food and Drug Administration considers a person’s own stem cells to be “drugs” and thus subject to the long, arduous and expensive clinical trial process.

Other countries have more relaxed stem cell regulations. This means that professional athletes and wealthy people can simply fly to Europe or Columbia to receive potentially life-saving therapy. Meanwhile, the average American – many of whom are financially devastated by COVID-19 – is left to languish and suffer.

Clearly, the incrementalism and gradualism that has for too long pervaded and permeated medical technological progress must give way to thoughtful, purposeful and conscious revolutionary reconsideration.

A ‘New Deal’ for Stem Cells

Up to this point in his nascent administration, President Biden has not made stem cell accessibility and affordability a priority. Yes, there are several clinical trials underway for stem cell candidates to treat the symptoms of COVID-19. And, to the FDA’s credit, these trials are being expedited.

But thick federal bureaucratic fog still stifles the commercialization of emerging stem cell modalities that Americans in pain so desperately need. The FDA has yet to approve a single stem cell product as a treatment for arthritis or any orthopedic condition.

Almost one year ago, I wrote that then FDA Commissioner Stephen Hahn had the opportunity to implement a stem cell “New Deal” that would provide much-needed clarity to the regulatory landscape by vesting the states with primary authority over autologous stem cells.

The “New Deal” baton has now been passed from the Trump administration to President Biden, who can help lead us the finish line of stem cell accessibility and affordability. His administration has an opportunity to make good on its pledge to do right by the American citizenry it has pledged to serve. President Biden, the American people are counting on you.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

The Gaslighting of Pain

By Ann Marie Gaudon, PNN Columnist

It’s become a buzzword. “Gaslighting” is a term used to describe the repeated denial of someone’s reality in an attempt to invalidate them. Its origins can be found in a misogynistic 1944 film showcasing a husband trying to convince his wife that she is insane.

To be clear, gaslighting is a form of emotional abuse and is not exclusive to romantic relationships. This attempt to manipulate a person’s reality is systemic and can be seen in social media, politics, cable news and even healthcare. When a medical professional invalidates, dismisses or even leads a patient to question their own thoughts and experiences, that is traumatic and abusive.

It is hardly news that women are more often told than men that their pain and other symptoms are emotionally-based and psychogenic: not real. Years ago, I attended a lecture given by a young woman detailing her experience with significant knee pain. She had seen several doctors to no avail; she was told the pain was all in her head. One doctor said the cause of her pain was due to “wearing her jeans too tightly and this is a common problem with teenage girls.”

She wondered out loud if this would have been her diagnosis if she were a male teenager. Eventually she did obtain a correct diagnosis for her knee pain which was osteosarcoma – the very same cancer that Canadian athlete and national hero Terry Fox succumbed to.

 A 2015 study interviewed women who had been hospitalized due to a heart attack but were reluctant to seek medical care, citing anxiety about “being perceived as complaining about minor concerns” and “feeling rebuffed or treated with disrespect.”

Since being diagnosed and treated for the female-only disease of “hysteria” in the 19th century, women’s emotions continue to be used as the cause for all that ails them. This inherent gender bias in healthcare is another form of gaslighting.

“We want to think that physicians just view us as a patient, and they’ll treat everyone the same, but they don’t,” Linda Blount, president of the Black Women’s Health Imperative, told BBC Future. “Their bias absolutely makes its way into the exam room.”

Your chances of being subjected to medical gaslighting increase if you are not white, cisgender or able-bodied -- essentially any marginalized group. However, do not be misled into thinking that all white males will be cared for with dignity and medical acuity. I have had conversations with men who have been dismissed time and again, and had their substantial suffering completely invalidated with the likes of “that [diagnosis] would never bother anyone.” Or they cannot even get a diagnosis and so are labelled as malingerers.  

‘You’re Making This Up’

At times, I am the only person in a patient’s life who actually has validated their pain, because their family does not believe them either. “You’re making this up” or “You’re not getting better because you don’t want to get better” are common themes told to my victimized clients. I watch as their teary eyes fluctuate hurriedly from boring into mine to staring down at the floor as they question their own sanity and if their pain is indeed real.

What happens next can lead to disastrous results. When physicians inappropriately conclude that a patient’s symptoms are all in their head, they delay a correct diagnosis – just like the young woman with knee pain. This can be especially dangerous for patients with rare diseases who already wait longer to be diagnosed as it is. According to a survey of 12,000 European patients, receiving a psychological misdiagnosis can make a proper diagnosis of a rare disease take up to 14 times longer.

The pain patients in my practice (as well as myself) have been told it’s just normal aches and pains, there’s nothing wrong with you, condescended to, yelled at, disbelieved, laughed at, mocked, called names, and dismissed in all manners of arrogance and ignorance.

We’re on the cusp of 2021 and I am still telling my pain patients not to go to any appointment alone because that makes you even more vulnerable to mistreatment. Another person in the room with you can temper abusive treatment by being there as a witness. No one suffering should have to go to any lengths to receive the care they deserve. However, that is reality.

We’ve come too far just to lie down and accept medical gaslighting. Do what you can to defeat this. Find a medical provider that you can connect with; someone who listens, is honest, and frank with you. I have had the privilege of having one physician who completely fits the bill and am now searching for the next.

Become your own advocate. Do not put up with someone who is condescending, arrogant, or mistreating you – fire this person. You and your health need to be taken seriously. Watch for biases and do report a gaslighting doctor. Go to the clinical supervisor, board of the hospital, and the regulating college or agency. Be direct and honest about how you were treated and demand they take action.

There is always a legal option as well if you were harmed physically and/or mentally by the grievous actions of a gaslighting physician. Whatever decision you make, above all else, do not accept this abuse. We must all speak up and speak out!

“Nothing strengthens authority so much as silence.”
Leonardo da Vinci

Ann Marie Gaudon is a registered social worker and psychotherapist in the Waterloo region of Ontario, Canada with a specialty in chronic pain management.  She has been a chronic pain patient for over 30 years and works part-time as her health allows. For more information about Ann Marie's counseling services, visit her website.

How to Appeal a Denied Health Insurance Claim

By Barby Ingle, PNN columnist

Most pain patients rely on their healthcare providers to appeal insurance company denial of care decisions for them. Some providers are now charging fees to do the appeal paperwork for a patient.

I have found that when I handled the appeal myself, I am often able to get coverage for what I needed and in a timelier manner. I get that this is a daunting process. Many insurers seem to deny coverage and then wait for the appeal. Only about 20% of us follow through on the appeals for a variety of reasons. But it can be done.

At the end of this article is a sample of the letter I send to my insurance company when I run into a situation where the prior authorization has either taken too long (more than a few days) or has been denied.

I start by including copies of my medical records that pertain to why I need a procedure, durable medical equipment or medication. I have kept all of my medical records going back to 2002 in 3-inch binders. I now have 10 binders full, and have them organized by provider and date of service. Keeping good medical records is key to filing an appeal, so you don’t have to start from scratch.  

It can be very helpful if you also attach 3-5 clinical studies that show the effectiveness of what you are requesting working for others with your condition. Try to use studies completed within the past 5 years and with an N of at least 500 (number of participants). Two places where you can look up studies are ClinicalTrials.gov and MediFind.

I know that finding a study can be quite tough for those with ultra-rare and rare medical conditions. If you fall into that category, mention in your letter that the treatment may still be worth a shot and save you from future medical bills and procedures – and help the insurance company as well.

Here’s a sample letter to use when appealing:

Date

Name

Insurance Company Name

Address

City, State ZIP

Re: Patient's Name, Type of Coverage, Group number/Policy number

Dear (contact person at insurance company),

Please accept this letter as my appeal to (insurer’s name) decision to deny coverage for (state the name of the specific procedure denied). It is my understanding based on your letter of denial dated (insert date) that this procedure has been denied because:

(Quote the specific reason for the denial stated in denial letter)

I was diagnosed with (disease) on (date). Currently Dr. (name) believes that I will significantly benefit from (state procedure name). Please see the enclosed letter from Dr. (name) that discusses my medical history in more detail.

I believe that I am attaching additional information that you did not have at the time of your initial review. I have also included with this letter, a letter from Dr. (name) from (name of treating facility). Dr. (name) is a specialist in (name of specialty). (His/her) letter discusses the procedure in more detail. Also included are additional medical records and several journal articles explaining the procedure and the expected results.

Based on this information, I am asking that you reconsider your previous decision and allow coverage for the procedure Dr. (name) outlines in his letter. The treatment is scheduled to begin on (date). Should you require additional information, please do not hesitate to contact me at (phone number). I look forward to hearing from you in the near future.

Sincerely,

Your name

I want you to have more concrete chances to get the care you need covered. I know that it will take work and won’t always be easy. It will take energy, which most of us already have challenges with.

I like to think about my future when I am in the middle of the appeal process. What would getting this insurance coverage mean to me? More life? A better life? Then it is worth it for me.  

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.