Teen in Chronic Pain Had Surgery, but Insurer Won’t Cover It

By Lauren Sausser, KFF Health News

When Preston Nafz was 12, he asked his dad for permission to play lacrosse.

“First practice, he came back, he said, ‘Dad, I love it,’” recalled his father, Lothar Nafz, of Hoover, Alabama. “He lives for lacrosse.”

But years of youth sports took a toll on Preston’s body. By the time the teenager limped off the field during a lacrosse tournament last year, the pain in his left hip had become so intense that he had trouble with simple activities, such as getting out of a car or turning over in bed.

Months of physical therapy and anti-inflammatory drugs didn’t help. Not only did he have to give up sports, but “I could barely do anything,” said Preston, now 17.

No Medical Billing Code

A doctor recommended Preston undergo a procedure called a sports hernia repair to mend damaged tissue in his pelvis, believed to be causing his pain.

PRESTON NAFZ

The sports medicine clinic treating Preston told Lothar that the procedure had no medical billing code — an identifier that providers use to charge insurers and other payers. It likely would be a struggle to persuade their insurer to cover it, Lothar was told, which is why he needed to pay upfront.

With his son suffering, Lothar said, the surgery “needed to be done.” He paid more than $7,000 to the clinic and the surgery center with a personal credit card and a medical credit card with a zero-interest rate.

Preston underwent surgery in November, and his father filed a claim with their insurer, hoping for a full reimbursement. It didn’t come.

But the final bill did: $7,105, which broke down to $480 for anesthesia, a $625 facility fee, and $6,000 for the surgery.

‘Trying to Wiggle Out’

Before the surgery, Lothar said, he called Blue Cross and Blue Shield of Alabama and was encouraged to learn that his policy typically covers most medical, non-cosmetic procedures.

But during follow-up phone calls, he said, insurance representatives were “deflecting, trying to wiggle out.” He said he called several times, getting a denial just before the surgery.

Lothar said he trusted his son’s doctor, who showed him research indicating the surgery works. The clinic, Andrews Sports Medicine and Orthopaedic Center, has a good reputation in Alabama, he said.

Other medical providers not involved in the case called the surgery a legitimate treatment.

A sports hernia — also known as an “athletic pubalgia” — is a catchall phrase to describe pain that athletes may experience in the lower groin or upper thigh area, said David Geier, an orthopedic surgeon and sports medicine specialist in Mount Pleasant, South Carolina.

“There’s a number of underlying things that can cause it,” Geier said. Because of that, there isn’t “one accepted surgery for that problem. That’s why I suspect there’s not a uniform CPT.”

CPT stands for “Current Procedural Terminology” and refers to the numerical or alphanumeric codes for procedures and services performed in a clinical or outpatient setting. There’s a CPT code for a rapid strep test, for example, and different codes for various X-rays.

The lack of a CPT code can cause reimbursement headaches, since insurers determine how much to pay based on the CPT codes providers use on claims forms.

More than 10,000 CPT codes exist. Several hundred are added each year by a special committee of the American Medical Association, explained Leonta Williams, director of education at AAPC, previously known as the American Academy of Professional Coders.

Codes are more likely to be proposed if the procedure in question is highly utilized, she said.

Not many orthopedic surgeons in the U.S. perform sports hernia repairs, Geier said. He said some insurers consider the surgery experimental.

Preston said his pain improved since his surgery, though recovery was much longer and more painful than he expected.

By the end of April, Lothar said, he’d finished paying off the surgery.

Partial Payment

A billing statement from the surgery center shows that the CPT code assigned to Preston’s sports hernia repair was “27299,” which stands for “a pelvis or hip joint procedure that does not have a specific code.”

After submitting more documentation to appeal the insurance denial, Lothar received a check from the insurer for $620.26. Blue Cross and Blue Shield didn’t say how it came up with that number or which costs it was reimbursing.

Lothar said he has continued to receive confusing messages from the insurer about his claim.

Both the insurer and the sports medicine clinic declined to comment.

The Takeaway

Before you undergo a medical procedure, try to check whether your insurer will cover the cost and confirm it has a billing code.

Williams of the AAPC suggests asking your insurer: “Do you reimburse this code? What types of services fall under this code? What is the likelihood of this being reimbursed?”

Persuading an insurer to pay for care that doesn’t have its own billing code is difficult but not impossible, Williams said. Your doctor can bill insurance using an “unlisted code” along with documentation explaining what procedure was performed.

“Anytime you’re dealing with an unlisted code, there’s additional work needed to explain what service was rendered and why it was needed,” she said.

Some patients undergoing procedures without CPT codes may be asked to pay upfront. You can also offer a partial upfront payment, which may motivate your provider to team up to get insurance to pay.

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

Insurer’s ‘Internal Policy’ Prevents Patients from Getting Needed Healthcare

By Barby Ingle, PNN Columnist

Patients, caregivers and providers have been fighting with insurance companies for years over step therapy practices, prior authorization delays and changes in specialty tier medications. If a claim is turned down by a payer, there is usually a way to appeal – such as a peer-to-peer review between a provider and a physician at the insurance company.

An insurance policy has come to my attention which ends peer-to-peer reviews and ultimately is a way to limit access to healthcare and avoid paying for certain treatments. Blue Cross Blue Shield of Kansas no longer allows physicians to speak directly to their medical director.

A peer-to-peer review occurs after receiving an authorization denial. Often the first denial is by a claims adjuster, who is usually not a medical professional. When that happens, the treating provider may request to speak with the insurer’s medical director to discuss the rationale for the denial. This process is sometimes referred to as a “doctor to doctor" appeal.  

Providers typically have a time frame where a peer-to-peer request must be made. For inpatient and pre-service requests, it is typically 5 business days. They have 60 days to complete the appeal from the date of denial.

Peer-to-peer requests are often not granted because they were made too late or there is insufficient clinical documentation. But they’re worth trying.

A Kansas provider recently requested a peer-to-peer meeting and received this email response from a representative of Blue Cross Blue Shield (BCBS) of Kansas:

“We used to have in our policy that we allowed requests for peer-to-peer reviews with our Medical Directors. We took that out a few years back and no longer give our providers that option. That is our internal policy.”

The email suggests this “internal policy” is not a known public policy or practice by BCBS of Kansas.

How are patients and providers able to get proper and timely care after an authorization denial if they are not able to request a peer-to-peer review?  I can see how this “internal policy” does save the insurer money over the short-term. But long term, not allowing physicians to speak directly to the medical director leads to delays and denials of care.

“Physicians are frustrated. Now this policy from BCBS of Kansas.  It is much easier to deny a piece of paper than a real human being.” says Gayle Taylor-Ford, a Kansas pain patient, provider and board member of iPain.

Step therapy and prior authorization policies are limiting access to healthcare for patients around the country. A recent study found that about 66% of prescriptions that get rejected at the pharmacy require prior authorization. Further complicating the situation is when a prior authorization is imposed, only 29% of patients end up with the originally prescribed treatment — and 40% end up abandoning therapy altogether!

This causes frustration, delay in care, depression, and poor adherence to treatment plans. The health of patients who don’t get the medication that could best treat their condition -- or who don’t get any therapy at all -- often gets worse. That leads to an increase in doctor and emergency room visits — and higher healthcare costs.

I wish we knew why BCBS of Kansas made this policy change. BCBS companies in other states still allow peer-to-peer reviews. Why is this a non-consistent policy and why is it even allowed in Kansas?

(Editor’s note: PNN asked for a comment from BCBS of Kansas and received this reply from a spokesperson: “While we appreciate you reaching out for comment, we respectfully decline to offer a response to the story.”)

There are already challenges in the peer-to-peer appeal process, as oncologist Rick Boulay, MD, described in KevinMD.com. Boulay wrote about his frustration getting cancer treatments approved when talking to the ‘insurance doctor’ who was supposed to be his peer.

“Most patients are unaware of this, but your physician is likely your biggest advocate when it comes to getting your care covered,” Boulay wrote. “At least weekly, and occasionally daily, insurance companies deny payment for some cancer treatment that I prescribe. In my career, I cannot think of a single aspect of the cancer care continuum that hasn’t been denied.”

At least Dr. Boulay was able to get peer-to-peer reviews and have some of those denials reversed. 

To deny our providers the ability to appeal is wrong. It’s just a new way to deny proper and timely access to healthcare. The fact that BCBS of Kansas is hiding its “internal policy” is also a sign that they know they are delaying and denying care that patients need.

It also raises a question. How many other insurance providers are doing the same thing?

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. 

This column is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Steep Decline in New Opioid Prescriptions

By Pat Anson, PNN Editor

The number of doctors writing new prescriptions for opioid pain medication has fallen by nearly a third in recent years, according to a large but limited study that documents a dramatic shift in opioid prescribing patterns in the U.S.

Researchers at Harvard Medical School studied health data for over 86 million patients insured by Blue Cross Blue Shield from 2012 to 2017, and found that first-time prescriptions for patients new to opioids – known as “opioid naïve” patients -- declined by 54 percent.

At the start of the study, 1.63% of Blue Cross Blue Shield patients were being treated with new opioid prescriptions. Five years later, only 0.75% were.

The study also found a shrinking pool of doctors willing to start opioid treatment. The number of doctors who prescribed opioids for opioid naive patients decreased by nearly 30 percent, from 114,043 to 80,462 providers.

The research findings, published in The New England Journal of Medicine, do not provide any context on the patients’ health conditions or the severity of their pain and injuries. As such, it is a data-mining study that provides no real information on the harms or benefits of opioids.

"The challenge we have in front of us is nothing short of intricate: Curbing the opioid epidemic while ensuring that we appropriately treat pain," lead investigator Nicole Maestas, PhD, an associate professor of health care policy at Harvard Medical School, said in a statement. "It's a question of balancing the justified use of potent pain medications against the risk for opioid misuse and abuse."

First-time prescriptions for opioids are usually used to treat short-term acute pain caused by trauma, accidents or surgery. They rarely result in long-term opioid use or addiction, but have become a major target for healthcare policymakers and anti-opioid activists. Several states have adopted regulations that limit the initial supply of opioids to 7 days or less.

While the number of doctors starting opioid therapy has fallen dramatically, Harvard researchers say many are still engaged in “high-risk prescribing” – which they defined as new prescriptions for more than 3 days’ supply or a daily dose that exceeds 50 morphine milligram equivalent (MME).

More than 115,000 of these “high-risk prescriptions” were written monthly for Blue Cross Blue Shield patients. Over 7,700 of the prescriptions exceeded 90 MME per day, a dose that researchers say puts patients at a substantially higher risk of an overdose. The study did not identify whether any of those high-dose patients experienced an overdose.

Opioid prescriptions in the U.S. have fallen sharply since their peak in 2010, but have yet to slow the rising tide of overdoses. Nearly 49,000 Americans died from opioid overdoses in 2017, over half of them due to illicit fentanyl and heroin, not prescription opioids.

Insurer Reports Soaring Rates of Opioid Addiction

By Pat Anson, Editor

The number of Blue Cross and Blue Shield (BCBS) customers diagnosed with opioid addiction has soared by nearly 500 percent in recent years, according to a new report that found only about a third of the addicted patients were getting medication assisted treatment.

The Health of America Report analyzed prescription data for over 30 million BCBS customers from 2010 to 2016. The report focused mainly on patients who use legally prescribed painkillers, while virtually ignoring addicts who use heroin, illicit fentanyl and other illegal opioids, who are now the driving force behind the nation’s opioid crisis.

"Opioid use disorder is a complex issue, and there is no single approach to solving it," said Trent Haywood, MD, senior vice president and chief medical officer for the Blue Cross Blue Shield Association, which represents 36 independent insurers that provide health coverage to over 100 million Americans.

“Opioid use disorder” is a broad and somewhat misleading term that includes illegal drug addicts, as well as chronic pain patients who take opioids responsibly, and develop a tolerance or dependence on them.

The BCBS report found that patients who filled prescriptions for high doses of opioids had much higher rates of opioid use disorder than those on lower doses. Women aged 45 and older had higher rates of the disorder than men. Women of all ages were also more likely to fill an opioid prescription.

The BCBS report found that patients who filled prescriptions for high doses of opioids had much higher rates of opioid use disorder. Women aged 45 and older had higher rates of the disorder than men. Women of all ages were also more likely to fill an opioid prescription.

Less than one percent of BCBC customers (0.83%) were diagnosed with opioid use disorder in 2016, a rate much higher than in 2010 (0.14%). The rise was attributed to “an increased awareness of the disorder,” suggesting that doctors were simply more likely to diagnose opioid addiction then they were in 2010.    

While the diagnosis of opioid use disorder rose by 493 percent during the study period, there was only a 65 percent increase in the number of BCBS customers who were prescribed addiction treatment drugs such as Suboxone (buprenorphine).

BCBS customers in the South were more likely to be diagnosed with opioid use disorder. Alabama led the nation with a diagnosis rate of over 1.6 percent, twice the national average.

The report noted that New England leads the nation in the use of medication-assisted treatments, even though the region has lower levels of opioid use disorder than other parts of the country. In Massachusetts, 84% of BCBS customers diagnosed with addiction were getting treatment with medication.

That prompted Blue Cross Blue Shield Association of Massachusetts to issue a press release claiming the state was “ahead of the nation when it comes to combating the opioid epidemic.” The insurer was one of the first in the country to take steps to significantly reduce access to opioids by its customers. As a result, only 2% of Blue Cross Blue Shield members in Massachusetts are receiving high doses of opioids, far less than the national average of 8.3 percent.

However, restricting access to pain medication has failed to stop a surge in opioid overdoses in Massachusetts, most of which are now caused by illicit fentanyl.  Over 2,000 people died of opioid overdoses in Massachusetts last year, almost three times the number of deaths in 2012, when Blue Cross Blue Shield began restricting access to painkillers.

MASSACHUSETTS DEPARTMENT OF PUBLIC HEALTH

Prescription opioids were involved in only 9% of the overdose deaths in Massachusetts at the end of 2016. In addition, the most recent report from the state's prescription drug monitoring program identified only 264 of the 288,519 people receiving Schedule II opioids as having “activity of concern” that could indicate they were misusing the drugs. That minuscule rate of 0.0915% hardly suggests that legitimate pain patients are the source of Massachusetts’s drug problem.

This week the largest health insurer in the Philadelphia area, Independence Blue Cross, announced plans to limit the prescribing of opioids in its network to just five days for acute pain -- making it one of the first insurers in the country to adopt such a strict limit.

Pain Patients Say Insurers Interfering with Treatment

By Pat Anson, Editor

It’s no secret that health insurance companies have been raising deductibles and co-pays, and generally making it harder for chronic pain patients to get treatment – whether it’s opioid pain medication or alternative therapy like massage or acupuncture.

But recent actions by some insurers have healthcare providers and patients saying the insurance industry has gone too far in its effort to reduce opioid abuse and is interfering with the doctor-patient relationship.

“My own insurance company just acted as a physician to remove the meds that I need by blackmailing a kind-hearted pain doctor,” says Jennifer Nelson, who has suffered from Reflex Sympathetic Dystrophy (RSD) in her left foot for nearly two decades.

The “blackmail” Nelson refers to is a form letter her pain management doctor received from Blue Cross/Blue Shield of Michigan warning that opioids, benzodiazepines and a muscle relaxant named Soma (carisoprodol) should not be prescribed together. Benzodiazepines such as Valium act as sedatives and are known to increase the risk of overdose when taken with opioids.

But Nelson says she’s used them safely for years to reduce pain, muscle spasms and to help her sleep.   

“Their threat is to pull their coverage from his office if even one patient tests positive for both opioids and benzodiazepines. So now my health insurance has become Big Brother?” said Nelson in an email to Pain News Network. She also included a copy of the form letter sent to her physician.

JENNIFER NELSON

“There is no legitimate medical indication for this combination of controlled substances,” the letter from Blue Cross/Blue Shield (BCBS) says. “If the diagnosis is opioid abuse or dependence, the continued use of sedatives is contradicted and the continued use of opioid analgesics is against DEA regulations. If the diagnosis is legitimately chronic pain, benzodiazepines are still contradicted as they lead to a downward spiral of pain control and function.”   

The only downward spiral Nelson feels is from having her Valium tapered.

“The muscle spasms came back with a vengeance,” she says. “The second night I woke up and I thought someone was pulling my leg off.”

 “I am very concerned that an insurance company states there is ‘no legitimate medical indication’ for the combination of opioids, benzo's and Soma,” says Lynn Webster, MD, past president of the American Academy of Pain Medicine.

“No (insurance) payer nor the DEA should be making this type of dogmatic statement.  Such a statement will be used by the DEA to prosecute any provider who prescribes this combination.  It is inappropriate for either a payer or the DEA to determine what a legitimate medical indication is for any single or combination of drugs prescribed.”  

Webster agrees that combining benzodiazepines with opioids is risky, but says Blue Cross/Blue Shield went too far.

“What is most lacking from the letter is an alternative.  BCBS has a responsibility to offer alternatives to the providers on how to treat anxiety in people who also have pain and or opioid addiction and anxiety,” Webster wrote in an email to PNN.

“I agree the combination of opioids and benzos and other CNS depressants should be avoided, but if the payer wants to practice medicine then they should make it clear that they will pay for cognitive therapy and other alternatives as long as it is needed or pay for other medications that are not as risky as benzos. It is unacceptable to just abandon people with pain, anxiety and/or addiction.”

Aetna “Super Prescribers” Warned  

The insurance company Aetna sent a similar letter to nearly 1,000 physicians in August, warning them about their opioid prescribing habits. The doctors were identified as “super prescribers” by Aetna after a review of insurance claims.

"You have been identified as falling within the top 1 percent of opioid prescribers within your specialty," the letter states.

Aetna’s chief medical officer told The Washington Post the letter was not meant as a threat, but merely a note of caution.

"We're asking you to look at your practice...and identify if the way you're prescribing narcotics is best practice," said Harold Paz, MD. "And if it's not, here's an opportunity to improve."

Kaiser Permanente – an HMO -- is also urging doctors in its network to reduce opioid dosages to those recommended by the Centers for Disease Control and Prevention. The CDC’s guidelines say prescribers “should avoid increasing dosage” over 90 mg of morphine equivalent units a day.

“That dose does nothing for me,” says Scott Michaels, who at age 55 is permanently disabled by severe back pain, arthritis and other chronic illnesses.

Michaels has a genetic condition that causes him to metabolize opioids quickly. For seven years, he’s been taking a daily opioid dose of 330 mg of morphine equivalent units – nearly four times what CDC and Kaiser Permanente recommend as a ceiling.

“I have a terrible metabolism so the medication goes right through me, hence the high dose. As of last month, Kaiser is reducing me 10% a month until I’m at 90 mg. I have no choice they said. The pain is already coming back and they don’t care,” said Michaels, who asked that we not use his real name.

“Kaiser is an insurance company and provider. To me that is a conflict of interest. I just don’t know what to do. It can’t be legal to withhold medication that has proven for me to work.”

Jennifer Nelson was also on a high dose of opioids that is now being reduced by her doctor to reach the levels recommended by the CDC. She says her health has deteriorated significantly and she’s worried about become bedridden.

“I lived a very high functioning life. My biggest fear is my seven year old not having a Mom to walk him to the bus stop," Nelson says. “Nineteen years and I've never overdosed or used my meds incorrectly. I submit to random urine tests and pill counts, and educated myself on my meds. So what do we do? Can insurance companies legally threaten doctors like that? And why are they quoting CDC guidelines when doing so? I'm infuriated. Exhausted, unable to sleep, gritting my teeth in pain, but infuriated.”

Insurers say their efforts to wean patients off high doses of opioids are producing results. Blue Cross/Blue Shield of California says its Narcotic Safety Initiative has resulted in an 11% reduction in members using the very highest doses and “prevented” 25% of all new opioid users from using the drugs for more than 90 days.  

Will these new policies also reduce the number of people dying from opioid overdoses?

Blue Cross/Blue Shield of Massachusetts – one of the first insurers to adopt tougher prescribing policies – says it has reduced the dispensing of opioids to its members by 15 percent since 2012.    But the new policies failed to slow the growing number of opioid overdose deaths in Massachusetts, which more than doubled.

Fewer Pain Meds but More Overdoses in Massachusetts

By Pat Anson, Editor

Opioid prescribing fell by 15 percent for members of Blue Cross Blue Shield of Massachusetts after the insurer adopted policies that discourage the dispensing of opioid pain medication, according to a new analysis by the Centers for Disease Control and Prevention.

The CDC’s Morbidity and Mortality Weekly Report found that 21 million fewer opioid doses were dispensed to Blue Cross Blue Shield members from 2012 to 2015. But the new policies failed to slow the growing number of opioid overdose deaths in Massachusetts, which more than doubled during the same period.

The CDC said it will "take time" before overdoses start to decline.

“Reducing the level of opioid prescribing is a long term strategy to limit exposure to these drugs. Mortality outcomes would not be expected to change for several years after implementation, and impact would be complicated by the increasing supply of illicit opioids,” Courtney Lenard, a CDC spokesperson, said in an email to Pain News Network.  

"Long-term strategies like the one outlined in the report take time to make an impact and therefore no immediate impact can be expected during the first several years of program implementation. Assessing what happened before and after the policy at the mortality level is inappropriate."

Blue Cross Blue Shield (BCBS) of Massachusetts is the state’s largest insurer, with about 2.8 million members.

In 2012, the insurer adopted policies that discourage opioid prescribing by requiring doctors to develop treatment plans that consider non-opioid therapies; requiring pre-authorization for all opioid prescriptions after an initial 30 day supply; and limiting some pain patients to use of a single pharmacy.

The effect was immediate, with an average monthly decline of 14,000 prescriptions for both short and long-acting opioids.

Although cancer patients were exempt from the policies, there was a 9% decline in opioid prescriptions to BCBS members with a cancer diagnosis. The CDC attributed that to a “sentinel effect” in which doctors implement the same policies for all of their patients regardless of diagnosis.

“I think oncologists were becoming more thoughtful and maybe more vigilant about how much narcotics they were prescribing and I think that’s why we saw that decrease in cancer patients,” said Tony Dodek, MD, associate chief medical director for BCBS of Massachusetts. “We’ve only received one complaint about the program in terms of people having access to necessary pain medications.”

Like the CDC, Dodek said it may take years before the stricter prescribing policies start to have an impact on overdoses. So far the signs are not encouraging.

Opioid overdoses in Massachusetts rose from 698 deaths in 2012 to 1,659 deaths in 2015. The trend has continued in the first six months in 2016, with nearly a thousand opioid overdoses reported. Two-thirds of this year’s deaths were related to fentanyl, a synthetic opioid that is increasingly appearing on the black market. Illicit fentanyl is often combined with heroin and cocaine, or used in the manufacture of counterfeit pain medication.

MASSACHUSETTS DEPARTMENT OF HEALTH

“It’s not surprising to me that overdoses have not gone down because there is still a lot of drugs in circulation,” said Dodek. “What we did was slow the supply of new medication that’s in circulation. The fact is there is already way too much medication sitting in people’s medicine cabinets at home and that is what was available to start this epidemic.”

The Drug Enforcement Administration has said the U.S. is being “inundated” with counterfeit painkillers and there are anecdotal reports of some patients turning to street drugs for pain relief as opioid medication has become harder to get. But Dodek says it is recreational users – not pain patients – who are resorting to the black market.

“Any pain patient isn’t having access problems to getting opioids,” he said. “Those who may be using it for recreational purposes or for diversion probably are having a more difficult time (getting prescriptions). We still need to figure out what to do about illicit drugs, but I think decreasing the amount of prescriptions drugs will only be a good thing in the end.”

And what about the effect on pain patients as these policies are adopted? The CDC report ends with this telling statement:

“Finally, it is not known from these data how patient pain and function were affected by limiting access to opioid prescriptions.”

Hoping to Survive the Weekend

By Sarah Daniels, Guest Columnist

How are chronic illness sufferers with life threatening problems supposed to be safe when the people working for the insurance companies, making life and death decisions about their medical care, have no medical training or background whatsoever?

Why is it up to some high school graduate whether or not I can get oxycodone? The same medication that a pain management specialist, primary care provider, neurologist, Ehlers-Danlos syndrome specialist, and 10 other doctors all agree I need to be on.

The is the same medication I was finally given permission to use after YEARS of suffering terrible pain every second of every day, being forced into physical therapy five different times, actually worsening my condition (it can be extremely dangerous for someone with Ehlers-Danlos to participate in physical therapy if the therapist has no knowledge of the illness), paying $8,000 for laser therapy with absolutely no results, and being forced to trial endless medications that are far more dangerous but cheaper for the insurance company -- just so I could be on a medication that we already knew was safe and worked with great results.

You know what is on my mind today? Whether or not I’ll be able to make it through the weekend without having a seizure and dying. NOT because I get seizures, NOT because my condition progressed so much that there is no hope, and NOT because the doctors don't know what is wrong with me or how to help me.

No, it is because a few people in some office working for a money hungry insurance company that has made a monopoly out of the health of our fellow citizens couldn't get their act together and figure out what was wrong on their end by 5 o clock Friday.

I was on the phone with Blue Care Network (Blue Cross-Blue Shield of Michigan) for hours Friday. HOURS! They couldn't tell me why I can't get my medication, just that I can't get it. They also wouldn't tell me if any of their rules or regulations changed.

They would only tell me that just because I never had a problem filling my meds before doesn't mean there isn't a problem now. They couldn't even tell me what the problem was!

I have the pharmacy, my primary care physician and my specialists all on my side, telling them I need the medication. Telling them how dangerous it will be if they don’t get this figured out. Telling them my life will be in jeopardy. And what is their response?

SARAH DANIELS

"Ma’am, I have no medical background so I can’t discern if that’s true or not.”  

Try Googling Ehlers-Danlos syndrome. Open your eyes, your heart and have some compassion!

I have done everything right. I have all the authorizations I need and have taken my meds as prescribed, no matter what the circumstances have been. This is why people all over the United States are dying. This is why suicide rates have jumped since the new CDC opioid guidelines have been put in place.

If I could pay for the medication out of pocket I would, but I am on disability like a lot of other people. My money can either go toward my rent and utilities or my medical bills, but it doesn’t pay for both. Most of the time I am struggling to have food on the table and gas in the car. I suppose on the bright side, with gastroparesis and a severe mobility disability, at least my need for both of those things is less.

You want to crack down on the heroin epidemic? How about allocating some funds for substance abuse and mental illness? How about counseling instead of jail time? Heroin addicts could care less about a rule or regulation. They will find a way to get high no matter what.

The war on opiates is killing chronic pain patients like me, who, if it weren’t for their medicine, would be bed ridden. We are the ones suffering. We are the ones paying for others’ choices and mistakes.

This isn’t right. Something has to be done. It’s 2016. There is no reason on earth that a 29-year old woman, a U.S. citizen, should have to worry about dying because they cannot get the medical care they need.

Sarah Daniels lives in the Detroit, Michigan area. She suffers from Ehlers Danlos syndrome and gastroparesis. Sarah is a proud supporter of the Ehlers Danlos National Foundation and the Gastroparesis Patient Association for Cures and Treatments (G-Pact).

Pain News Network invites other readers to share their stories with us.  Send them to:  editor@PainNewsNetwork.org. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.