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 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.jpg

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 FoundationShe 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.

Always Check Your Medical Bills and Insurance Statements

By Barby Ingle, PNN Columnist

Recently I received a medical bill and noticed my insurance did not cover any of the costs of my treatment for an emergency care visit. This particular visit happened when I woke up in pain and feeling like I couldn’t take a full breath. I thought it might be a partial lung collapse, something that I have experienced before.

About a month after the emergency care visit, I receive a bill from the provider. The first thing that I checked on the bill was my vital information: name, address, phone and insurance card ID. They had the wrong first and last name and my social security number instead of my plan number.

No wonder the insurance company denied it! It looked like someone else was trying to be me and got the details wrong.


I have done many interviews and articles over the years about medical billing. If I didn’t know how to catch these mistakes, I would have gotten stuck paying the entire bill.

Studies show that 8 in 10 medical bills have at least one minor mistake. These mistakes add up and cost society more than $68 billion in unnecessary healthcare spending, according to Medliminal Healthcare Solutions, a company that helps patients find and fix medical billing errors.

When I checked into the emergency care center that day, I was not able to speak very well and my husband handled the check-in process. He presented my drivers license and insurance card.

When the nurse called me back, she said my name incorrectly, close but incorrect. I corrected her and told her to make sure it is correct in the system because if data such as my name is not correct, the insurance won’t pay. She confirmed my name and the spelling and updated her system. The billing still got it wrong.

When I went back to the emergency care center with the medical bill, the front desk lady said the information was in their system correctly, but billing is done by another group and sometimes data gets mixed up. She gave me the info to contact the billing company.

After returning home, I called the billing company. Their representative said they had my name correct but corrected my insurance information. They are going to re-bill my insurance. My co-pay portion should only be 20% of the bill.

It literally came down to multiple people making little mistakes that led to me receiving a bill that was incorrect. If I didn’t check and see the errors, I would have gotten stuck paying the full amount.

Over the years this has happened quite a number of times to me and I am sure it happens to others. If you don’t compare your explanation of benefits (EOB’s) and provider bills against each other, you could pay more than you should for medical services. This can also happen if you don’t check your medical records. If a medical record is incorrect, you may not care at the time, especially if you received the appropriate care.

But what if you’re in an emergency situation where you can’t check and verify what is in the system? You may end up being given medications that you no longer take due to out-of-date prescription and medical records. You may even be denied coverage because of misinformation in your records.

What billing data should you check? Start with your name, date of birth, date of service, services provided and insurance information. For your medical records, check your name and date of service. Make sure to view your lab results, radiology reports, surgical reports, follow-up care suggestions, and daily notes from nurses and providers.

Also check your insurance EOB’s to see if the co-pays and deductibles you’ve paid matches up with their data, and you get the maximum coverage under your plan. Always check and correct medical information and bills. If you are doing it by phone, record the call if you are in a state where that is allowed. If not, then take good notes. Be sure to keep a copy of every provider bill, EOB, email and letter for your records.

Over a lifetime of chronic illness, you’ll save yourself thousands of dollars and get access to better care.

Barby Ingle.jpg

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 FoundationShe is also a motivational speaker and best-selling author on pain topics. More information about Barby can be found at her website.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Employers Adding Stem Cell Options to Insurance Plans

By Liz Szabo, Kaiser Health News

A Midwestern grocery chain, Hy-Vee, is taking an unusual approach to reducing health care costs. Before employees in certain cities can undergo knee replacement, they first must visit a stem cell provider.

Hy-Vee has contracted with one of the United States’ leading stem cell companies — Regenexx, based in Des Moines, Iowa — that claims injections of concentrated bone marrow or platelets can help patients avoid expensive joint surgery.

Regenexx has persuaded over 100 employers to include its services in their health insurance plans. In a marketing booklet, Regenexx, whose injections range in price from $1,500 to $9,000, notes that its treatments cost a fraction of major surgery.


A single knee replacement ranges from $19,000 to $30,000 in the U.S.

Health insurance typically doesn’t cover stem cell injections, with the exception of certain accepted treatments, such as bone-marrow transplants for cancer and aplastic anemia.

Aetna, the United States’ third-largest health insurer, dismisses stem cells and platelet injections as experimental; Anthem, the country’s second-biggest health insurance provider, classifies the injections as “not medically necessary.” Without insurance coverage, patients are forced to pay out-of-pocket or forgo treatment.

So instead of dealing with disapproving insurance executives, Regenexx appeals directly to employers large enough to fund their own health plans. These businesses have the freedom to customize their plans, covering services that aren’t part of a standard insurance package.

In a statement, Regenexx said its goal is to “replace more invasive surgical orthopedics” with nonsurgical options, noting that recent research has found many joint operations are ineffective. On its website, Regenexx claims its procedures “repair and regenerate damaged or degenerated bone, cartilage, muscle, tendons, and ligaments.”

In a bone marrow stem cell procedure, for example, a doctor withdraws bone marrow cells from a patient’s hip, concentrates them, then reinjects them into a problem area, such as an arthritic knee. Doctors target the exact location in the joint using ultrasound. For a “platelet-rich plasma” treatment, doctors draw blood, concentrate the platelets, then inject them into the target area.


Regenexx, previously known as Regenerative Sciences, is one of the oldest stem cell companies in the U.S. When it opened its doors in 2005, it had only a handful of competitors.

Today, there are more than 1,000 stem clinics in the U.S., said Leigh Turner, an associate professor at the University of Minnesota’s Center for Bioethics, who has published a series of articles describing the stem cell market.

At times, Regenexx has clashed with the Food and Drug Administration. In 2010, for example, Regenexx sued the FDA, claiming the agency lacked the authority to regulate its procedures, which involved culturing stem cells before reinjecting them into patients. Regenexx lost its case and was countersued by the FDA, which charged that Regenexx was marketing an unapproved drug. In 2014, the U.S. Court of Appeals in Washington sided with the FDA, forcing Regenexx to stop performing the controversial procedures.

Today, Regenexx performs this procedure only in the Cayman Islands, where the government allows it. The Cayman Islands, where there is less government regulation of health care, has become known as a medical tourism destination, Turner said.

Regenexx says that the treatments offered at its U.S. clinics comply with FDA regulations, which require that cells injected into patients undergo no more than “minimal manipulation.”

On its website, Regenexx lists more than two dozen studies led by its doctors. For example, its chief medical officer, Dr. Chris Centeno, published a small study last year that found patients with knee arthritis who received bone marrow and platelets fared better than those randomly assigned to exercise therapy.

Other research suggests stem cells and platelets may work no better than placebos. In a recent analysis, over 80% of patients with knee arthritis experienced a noticeable improvement in pain after receiving simple saltwater injections.

There’s also no definitive evidence stem cells and platelets can regrow lost cartilage. A 2018 review concluded platelets have “marginal effectiveness,” and experts note that most published studies are so small or poorly designed that their results aren’t reliable.

Corporate Boosters

Corporate executives have become some of Regenexx’s biggest boosters. Hy-Vee’s former chairman and CEO, Ric Jurgens, appears in a Regenexx marketing brochure and says that he turned to Regenexx because of heel pain. The brochure, which was removed from a Regenexx website after Kaiser Health News began reporting this story, quotes Jurgens as saying, “I knew that giving our employees the chance to explore options besides surgery was in their best interest.”

Hy-Vee did not make Jurgens or other employees available to interview.

Perhaps Regenexx’s best-known corporate client is Des Moines-based Meredith Corp., which owns multiple TV and radio stations, as well as magazines such as Better Homes & Gardens.

Steve Lacy, Meredith’s former CEO and current board chairman, said he underwent a Regenexx procedure two years after his company began covering stem cell treatments. He had been facing knee surgery and thought stem cells were worth a try.

The procedure got him back to doing everything he wants to do, Lacy said, even running several days a week. He also has done daily physical therapy for over two years. “The rehab and recovery is far less onerous” with the Regenexx procedure than with surgery, Lacy said. “If the procedure doesn’t work for an individual, there’s no harm.”

Meredith has spent about $400,000 in four years on 85 employees who have had Regenexx treatments, or about $4,700 a patient, said Meredith spokesman Art Slusark. That’s a small share of the roughly $75 million a year that Meredith spends on its medical plan, he said.

At its headquarters, Meredith has promoted Regenexx procedures through email, posters and “lunch-and-learn” sessions in the office, said Jenny McCoy, Meredith’s corporate communications director.

McCoy herself has become a poster child for Regenexx’s benefits. She and two other Meredith employees appear with Lacy in a marketing video on the Regenexx site:

Although McCoy had begun to experience knee and hip pain during exercise, she said in an interview that her pain was not severe enough to need surgery. McCoy underwent platelet injections two years ago and is pain-free today, she said.

“I thought, ‘If Meredith is covering it, I might as well have it done early before [the pain] causes me too many problems,’” said McCoy, 52. Given the price tag, she said, “I would not have done it otherwise. I wouldn’t have even known about it.”

‘Very Pushy’ Marketing

Some employers are, in fact, skeptical. The Des Moines Public Schools has opted not to add Regenexx to its employee health plan, said Catherine McKay, director of employee services for the school system. She said a salesman for a local stem cell clinic, which has since merged with Regenexx, told her the treatments could save the school system lots of money. McKay wasn’t sold.

“My experience with them has not been great, in terms of marketing and sales. They’re very, very pushy,” McKay said. “They claim they can get people back to work earlier” than surgery. “But if I still need knee surgery a year down the road, that doesn’t cut my costs.”

The Des Moines school system has agreed to consider covering Regenexx procedures as part of its workers’ compensation program on a case-by-case basis, McKay said. The school system has not signed a contract with Regenexx, however, and hasn’t included Regenexx in its health plan.

McKay said she knows of two school employees who have tried Regenexx. While one employee was satisfied with the results, McKay said, another “went through a couple procedures and ended up needing surgery anyway.” 

In response, Regenexx noted that many patients who undergo knee surgery are also unhappy with the results. Research suggests that up to one-third of those who have knees replaced continue to experience chronic pain, while one-fifth report that they are dissatisfied with the results of their surgery.

Kaiser Health News, a nonprofit health newsroom whose stories appear in news outlets nationwide, is an editorially independent part of the Kaiser Family Foundation.

A Pained Life: Who Benefits From the Opioid Crisis?

By Carol Levy, PNN Columnist

For the first time in almost 40 years, I have to fight to get my codeine prescription filled.

I understand intellectually what so many pain patients have said about the frustration, upset and upheaval they experience when a pharmacist refuses to fill their prescription or insurance refuses to pay for it. Or harder still, what they go through having their opioid medications cut down or stopped completely.

But I did not understand the emotional side of it until it happened to me.

The insurance company refused to pay for my codeine prescription. They had no problem filling it for the last many, many years but suddenly they need "authorization" from the doctor. How does that make sense? Writing the prescription was authorizing. Why do they need to add a second permission?

It is now over three weeks. The pharmacist tells me they have contacted the doctor's office three times: "You need to call them and find out why they haven't responded."

When I call the office, they tell me the pharmacy never sent over the forms they need.

So I call the pharmacy back. They recite a fax number for the doctor’s office. It is not the right number. I give them the number the doctor's office just gave me. “We'll try it again right now,” she says.


I keep my fingers crossed and hope I don't run out of pills before it is resolved — if it is resolved.

The pharmacy clerk and I talked the day the prescription was refused by the insurance company. I was venting my frustration over not being able to get the prescription filled, especially because it is the same prescription I have had for years, one that was always covered by my insurance.

To my surprise she says: "It is not just narcotics. Many insurance companies are refusing to cover or making unwarranted demands, requiring many more hoops to jump through. They have refused to cover certain creams and hormones, other prescriptions, non-narcotics that are routinely given and, until now, paid for by the insurance companies."

This is appalling. And makes no sense.  

But then I start thinking about it and was struck by a thought: Yes, there is an opioid crisis. And we’ve all heard the reasons they blamed patients for the “crisis.”  But I think there may be another factor at play: the profit margin.

After all, if we pay insurance premiums but they refuse to pay for our medication -- forcing some folks to pay cash rather than wait for all the rigamarole to be completed -- then the insurance company comes out way ahead. They get our monthly fees and work to make sure we get as little as possible in return. 

I hope I am merely being paranoid. But somehow, I doubt it.

Carol Levy250.jpg

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

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.

Many Alternative Therapies for Back Pain Not Covered

By Pat Anson, PNN Editor

A new study by the Johns Hopkins Bloomberg School of Public Health has confirmed what many back pain sufferers already know: Public and private health insurance plans often do not cover non-drug alternative pain therapies.

Bloomberg researchers looked at dozens of Medicaid, Medicare and commercial insurance coverage policies for chronic lower back pain and found that while most plans covered physical therapy and chiropractic care, there was little or no coverage for acupuncture, massage or counseling.

"This study reveals an important opportunity for insurers to broaden and standardize their coverage of non-drug pain treatments to encourage their use as safer alternatives to opioids," says senior author Caleb Alexander, MD, a professor of epidemiology at the Bloomberg School.  

Alexander and his colleagues examined 15 Medicaid, 15 Medicare Advantage and 15 major commercial insurer plans that were available in 16 states in 2017.

Most payers covered physical therapy (98%), occupational therapy (96%), and chiropractic care (89%), but coverage was inconsistent for many of the other therapies.

Acupuncture was covered by only five of the 45 insurance plans and only one plan covered therapeutic massage.


Nine of the Medicaid plans covered steroid injections, but only three covered psychological counseling.

"We were perplexed by the absence of coverage language on psychological interventions," Alexander says. "It's hard to imagine that insurers wouldn't cover that."  

Even for physical therapy, a well-established method for relieving lower back pain, insurance coverage was inconsistent.

"Some plans covered two visits, some six, some 12; some allowed you to refer yourself for treatment, while others required referral by a doctor," Alexander says. "That variation indicates a lack of consensus among insurers regarding what model coverage should be, or a lack of willingness to pay for it.”  

The Bloomberg study is being published online in the journal JAMA Network Open.  It was funded by the U.S. Department of Health and Human Services, National Institutes of Health and the Centers for Disease Control and Prevention.  

Lower back pain is the world’s leading cause of disability, but there is surprisingly little consensus on the best way to treat it. A recent series of reviews by an international team of experts in The Lancet medical journal found that low back pain is usually treated with bad advice, inappropriate tests, risky surgeries and painkillers.

“The majority of cases of low back pain respond to simple physical and psychological therapies that keep people active and enable them to stay at work,” said lead author Rachelle Buchbinder, PhD, a professor at Monash University in Australia. “Often, however, it is more aggressive treatments of dubious benefit that are promoted and reimbursed.”

The authors recommend counseling, exercise and cognitive behavioral therapy as first-line treatments for short-term low back pain, followed by spinal manipulation, massage, acupuncture, meditation and yoga as second line treatments. They found limited evidence to support the use of opioids for low back pain, and epidural steroid injections and acetaminophen (paracetamol) are not recommended at all.

Tips for Surviving the Rising Cost of Healthcare

By Barby Ingle, Columnist

In my 20+ years as a chronic care patient, I have had over $1 million in medical bills. By the time I pass away, it may be nearing the $2 million mark for me.

Although insurance covered most of my healthcare costs, I’ve paid tens of thousands of dollars in out-of-pocket expenses and deductibles. Chronic illness can wipe you out financially. I had to sell my house to help pay the bills. Family and friends pitched in by hosting medical fundraisers for me.

This was before I realized that I was overpaying, that I could negotiate some prices, and that there were time savers and tools I could use to help keep costs down.  Here are a few tips that I use to keep my medical expenses low.

Shop around for healthcare services. Use websites like Amino, BuildMyBod or Healthcare Bluebook to find out what your out-of-pocket costs are likely to be for an x-ray, lab test or doctor’s appointment. They can also help you choose an insurance plan that will cover the treatments you are most likely to need.


Many providers have cash prices for procedures or tests that are lower than what they charge insurers. I have even paid cash to a provider, submitted the insurance claim myself and received a full refund.

Had my provider submitted the paperwork, it would have cost me more out-of-pocket and my care would have been delayed waiting for a prior authorization.

When it comes to prescriptions, check for deals, coupons and if generic medication is available. Don't be afraid to ask. Many pharmacy chains sign contracts with pharmacy benefit managers (PBMs) that bind them not to tell a patient that the cash price would be lower, unless the patient asks first. This is known as a PBM clawback and it leads many patients to abandon their scripts because they don’t think they can afford to pick up the medication. 

Pharmacies, manufacturers and coupon companies offer discount pricing that can save you significant amounts.  Walgreen's has a prescription savings club, which can provide savings from $50 to over $100 on a 90-day supply of a medication. I primarily use Walgreen's, but if another pharmacy has a lower price for something like an antibiotic, I will go to them.

I also have my doctor sign my scripts “fill as written,” which can lower the cost of brand name medications run through my insurance card. Always check on how similar the generic is to the brand name. By law they only have to be 70% of the original formulation. The fillers used in generic drugs can vary, so things like time-released medication can work differently than the brand name. It’s important to check on this when looking at how much savings you can create. You want the generic medication to work just as effectively for you.

Walk-in clinics are becoming popular for routine care appointments. By my house there is an urgent care clinic and a Walgreen's clinic that offer online check-in so that patients can avoid lengthy waits. They call or send a text to let you know you are next, so you can head down and spend less time in their waiting room with other sick people. In major cities there are health fairs that offer free or low-cost medical services to uninsured and under insured patients.

I also utilize concierge providers through a monthly subscription. Anything the primary care provider can do in his office is included in the monthly fee, which if you pay quarterly or yearly will be even lower. Sometimes I don’t even have to go see the doctor, I can teleconference with him and he can just call in a script that I will get quicker and cheaper. I save the more expensive ER visits and specialty care for real emergencies like allergic reactions, broken bones, and other life-threatening situations I have had.

My final tip is the use of health apps that allow patients to check the prices of prescriptions, get discounts, print medical records, and store emergency information on your phone for paramedics to access. I like GoodRx and Needy Meds for finding the least expensive medications nearby. And I use HealthTune’s app for mindfulness music, which is a free streaming platform that offers scientifically researched music to support your health.  

No matter what choices you make to save money, the more organized you are with your healthcare and medical records, the better your future care will be. I’d love for you to share in the comment section what tips you use to keep your healthcare costs down.

Barby Ingle.jpg

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. 

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.

Opioid Medication Has Been a Godsend to Me

Susan Lay, Guest Columnist

I have been on pain medication for over 30 years, starting with Vicodin. My doctor at the time wasn't concerned about the hydrocodone in Vicodin as much as he was the amount of acetaminophen in it, as it could destroy my liver.

He sent me to an anesthesiologist, who has been my pain doctor for over 20 years. After all the nerve blocks, physical therapy, imagery, TENS unit, spinal cord stimulator, pain pump, etc., I was given Roxicodone. Afterwards, OxyContin was created and then time released OxyContin.

I couldn't tolerate them, so he gave me fentanyl patches (which were new on the market) with fentanyl lozenges for breakthrough pain. My insurance eventually denied the lozenges. The patches were wonderful because I had no feelings of being “high” like other drugs. They made it possible for me to continue working and have a life. I have used the patches since that first day and they've been a Godsend.

Subsys spray was prescribed for breakthrough pain about 6 years ago, but at $22,000 a month, my insurance only paid for a year.

I'm so fortunate to still have the same doctor, although he's getting older and will retire soon. My main issue has been with pharmacies. I live in a very rural area of California and about 2 years ago my regular pharmacy refused to fill any opioids due to DEA and other concerns. My doctor has continued to write scripts for me, but I found them extremely difficult to fill. All the pharmacies I tried, including Walmart, Rite Aid, Walgreens and Safeway, denied me. Some felt uneasy, would only fill a script for 2 months, or just plain would not fill them!



I tried mail order prescriptions, but they eventually stopped. I tried a small pharmacy 2 hours away, but had to talk the pharmacist into it, after he requested 6 months of medical records and advised me they would only fill my prescriptions every 30 days, with no early refills for vacations.

All has been good this past year, although I don't know if my insurance will continue to cover my meds. I'm 70 and on Medicare Part D. I've never increased the amount of patches or strength I use. I have Dilaudid for breakthrough pain, which doesn't help much, but some. I do what many other pain patients do to get their medication: drive for hours to my doctor once a month, undergo drug tests, sign pain contracts, and use no alcohol. I must go to office if they call for a drug count.

I discovered withdrawal from the fentanyl patches isn't as horrible for me as it is for addicts who just want to get high. I've had to go without for 5-6 days a few times, when the pharmacy was closed or I couldn't get to the doctor. My doctor explained that those in real pain are wired differently and withdrawal is usually easier. He did give me a script for methadone if I'm ever in that position again.

I feel extremely lucky to have a doctor who actually cares enough to help his patients. His contract says if any patient must go off opioids (for missing an appointment, using alcohol or whatever) he will assist us through withdrawal so we don't suffer.

It's the insurance and pharmacies that are causing us so many problems. Does anyone in other states have these issues? Marijuana is legal in California and we're a progressive state, yet even in my small rural area we're having major issues. Several pharmacies have closed, due to scrutiny by the DEA and other government involvement. It's not worth it to be constantly going through records and double-checking the way they do things.

Insurers and pharmacists have more power than doctors. Even with an honest and necessary prescription, they continue to over-ride doctors’ decisions. Pharmacists refuse to fill for quantities doctors have written, even when insurance agrees with that quantity. When a doctor speaks to the pharmacist, it makes no difference. When did pharmacists become doctors? The same goes for insurance companies that now refuse to pay for prescriptions they've covered for years.

I just don't get it. I'll do anything I can to fight FOR chronic pain patients and AGAINST those who don't give a damn about us and think if you use opioids you're a drug addict!


Susan Lay is a retired nurse and day care operator. She lives with chronic shoulder and knee pain.

Pain News Network invites other readers to share their stories with us. Send them to

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It 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.