Advocacy Patient stories

Buyer Beware

The cost of health insurance had been a struggle for Diane Steele for years. Even the plans offered by her husband’s employer were too expensive when they had children at home. For a while, the family had to go without insurance. When Diane learned about health share programs, she saw this as an affordable way to protect her family.

Health share programs (sometimes called medishare or healthcare sharing ministries) are faith-based programs in which members pay a monthly “share” (notably not called a premium), which is pooled together with other members to pay for approved medical expenses.

While health share programs have been around for decades, because they are significantly less expensive than traditional health insurance, their popularity has increased in recent years as healthcare costs and insurance rates have skyrocketed. Part of the reason they are less expensive is they are not actual health insurance.

Program guidelines for what will be covered are often limited and may be determined by religious beliefs rather than medical need. Some health shares, for example, specifically exclude things like birth control, addiction treatment, or conditions related to smoking or alcohol abuse. Health share programs may even require members to sign a statement of faith, and some require verification of regular church attendance.

Because these programs have a religious affiliation, they also are not subject to mandates imposed by the Affordable Care Act (ACA), such as coverage for preexisting conditions and no lifetime caps on coverage. Most also specifically exclude drug coverage, especially for long-term treatment of chronic conditions such as diabetes or heart disease. Instead, members are steered to prescription discount cards like GoodRx and NeedyMeds to help pay for insulin and high blood pressure medication.

“We went with the health share because of the cost, and because we liked the idea of helping other people,” Diane says. “The funds go into a universal plan, and as people need it and qualify for it, they cover your costs. The only thing is you have to get approval up front for any kind of major outlay.”

Having to get approval for major healthcare expenses seemed like a small concession for Diane and her family, one that seemed routine when her husband needed major open-heart surgery a few years ago. The health share covered all of the expenses of that hospitalization with little hassle.

When Diane was diagnosed with chronic inflammatory demyelinating polyneuropathy (CIDP) in 2017, however, she discovered limitations that were much more of a hassle. CIDP is a rare disease of the nerves and muscles in which inflammation causes disabling numbness, weakness, and pain in the legs and arms. It is a chronic condition that often requires a lifetime of treatment.

“I was so sick,” Diane says. “I couldn’t walk. I couldn’t drive. I was basically in a wheelchair most of the time. And I was gradually getting worse and worse.” 

Among the medications her neurologist prescribed for the condition was Gammagard, a form of intravenous immune globulin therapy (IVIG). This treatment, derived from donated human plasma, is very expensive, but it’s also very effective for a wide variety of autoimmune conditions like Diane’s. IVIG treatments did allow Diane to return to a more normal life, one that no longer includes a wheelchair, but the health share refused to pay for it.

“I worked and worked with the health share,” Diane says. “I talked to all kinds of people over there, and often had to ask for the supervisor’s supervisor. It was so complicated. They didn’t even know what Gammagard was.”

The health share required Diane to have a number of different tests to prove the diagnosis. They also required her to try other, less expensive medications (a process known as step therapy) to show that these treatments didn’t work for her condition. And they wouldn’t approve it just based on the doctor’s prescription. Her neurologist had to send them an extensive written report to justify the scientific basis for using IG for Diane’s disease.

To be fair, Diane’s experience with the health share program was not unique. Even traditional health insurance companies require preapproval for expensive treatments like IG therapy. Many also impose limitations on doses or frequency. There is often a large copay, and some will completely deny coverage for the treatment, especially if it is being prescribed off label (for a treatment that is not approved by the FDA for a particular condition).

But even after jumping through all these hoops, the health share only approved the treatment for forty-five days as a test to see if it would work. And the dose they allowed was also lower than what the doctor prescribed. Even when it did prove to be effective, the health share refused to cover the cost.

After the forty-five-day trial period, Diane worked with her specialty pharmacy to access the life-saving treatments she needed. They helped her apply for a special patient assistance program through the manufacturer that provided the medication for free. The specialty pharmacy then provided the nursing services and supplies at no cost. They also helped her apply for Social Security Disability, which would allow her to enroll in the more comprehensive benefits available through Medicare.

“Diane’s story is a cautionary tale that underscores the need to know what you’re buying when you purchase healthcare coverage of any kind,” says Michelle Vogel, head of patient advocacy for CSI Pharmacy. “All plans have restrictions and limitation. But when a plan is so inexpensive compared to the norm, you have to be especially careful to understand what they will pay for and be sure it covers the care you need.”

CSI Pharmacy stories

I’ve been shot!

For this whole pandemic, I’ve had this admittedly distant relationship with this terrible disease. I certainly mourn the more than half a million COVID deaths in this country. I am troubled by the more than 32 million people who have suffered with the disease. And I am concerned for the long-term impact for those, like some of my colleagues, who continue to experience symptoms months after testing positive.

Still all the deaths, the rising and falling cases, the fatigue and heroism of my colleagues in healthcare, even the fear that makes my friends and the patients I write about desperate for a vaccine—none of this has touched me, not directly, not with any real impact. Until yesterday.

For weeks, everyone I know has been getting vaccinated, while I sit and wait for my turn. I’m not old enough, unhealthy enough, or essential enough. That has been my refrain. Being under 65 and safely tucked away at home and healthy, I don’t yet qualify in the prioritization of vaccine distribution. I’m part of phase 2: everybody else. Until yesterday.

Yesterday, my friend Liz, who is a nurse at the university, called me. It’s been far too long since I’ve seen Liz, so I was surprised when her name appeared on my caller ID. She was working at the vaccine clinic and she wanted to let me know my time had come. “We have vaccine available and no one in line,” she said. “If you can get here by 7:30, you can get one.”

It was 6:00. I jumped into the shower and then into the car. As I drove to the shopping center where the clinic was set up, I realized I was excited about this. After months of biding my time and anticipating at least another couple weeks of waiting, I was finally going to get my shot! I would take pictures. I would send them to friends to announce this thrilling experience. This was cause for celebration!

I danced into the cavernous space arrayed with two-dozen vaccinator stations, a long row of check-in stations, and dozens of friendly people to usher me efficiently through this rite of passage. And though no one could tell, because it was covered by my mask, my smile was huge.

I was able to ask for Liz to give me my shot. My friend and I talked and laughed and caught up, and she took my picture. We were having so much fun that I either lost my vaccine card or she forgot to give it to me. So after my 15 minutes of hanging out to see if I would have an allergic reaction, I had to go back and have her make me a new one.

But this morning, as I lay in bed worrying whether the vague headache I feel is a side effect of the Pfizer vaccine or merely my usual need for morning coffee, it occurs to me that now this virus has actually touched me. (At least an mRNA representation of the virus has.)  It is inside my body. And now my amazing body is doing what needs to be done to make sure I can continue to feel untouched by COVID. I’m so grateful!


Advocating for What is Right

As head of patient advocacy for CSI Pharmacy, Michelle Vogel spends much of her time jumping through hoops on behalf of patients to get insurance companies to pay for the essential services they need. She also wasn’t shy about advocating for herself when she was in the hospital last summer with COVID pneumonia.

Recently, however, Michelle got a bill for several thousand dollars from the hospital for services not covered by her health insurance plan during that episode, and it baffled her. She had already met her annual deductible and out-of-pocket maximum, so she expected all further charges to be covered.

When she reviewed the itemized statement, however, she could see that some of the charges for the nurse practitioner who oversaw her care were being denied by her insurance company. What she couldn’t understand was why the plan denied these charges on some days but not on others, even though the codes used to identify those services were identical. It didn’t make sense.

“I do appeals for a living, and I didn’t even know how to go after this one,” Michelle says. “How do you appeal something when you don’t really know why you’re being denied?”

Michelle spent hours on the phone with customer service representatives from both the hospital and the insurance company, trying to unravel these questions and to press her case for what she knew was right. But the insurance company insisted that the hospital had filed the claim with the wrong procedure code, and the hospital insisted that they had not made a mistake.

On top of it all, Michelle is a COVID long-hauler. More than six months later, she still has lingering shortness of breath, daily migraine headaches, severe fatigue, and stomach symptoms. Having to fight with the insurance company over a bill they should have paid to treat this disease was more than she could bear.

At one point, Michelle was ready to give in and just pay the bill. The hospital had reduced some of the charges, but she was still left on the hook for nearly $1,000 dollars that she thought should have been covered by insurance. But it was a lot of money, and she couldn’t just let it go.

“It was irking me to no end,” she says. “And I kept thinking, how many of our patients get bills like this. What do they do?”

What Michelle did was write letters to both the insurance company and the hospital. In these letters, she briefly told her personal story about how her mother unknowingly exposed her to COVID, how her mother died from the disease shortly after, and how Michelle spent nearly a week in the hospital struggling for her life.

She then explained what she understood about the insurance case and asked that her situation be reevaluated and the charges covered or dropped. In making her case, she included details—claim numbers, procedure codes, and charges she was being billed for—along with her understanding of what her insurance plan should have covered.

In the end, she was successful. Recently she received a notice from the insurance company saying the denial was overturned and they would cover the outstanding charges. It was a huge success for this patient advocate as well as a lesson in perseverance. Now, she says, she will write letters for everything.

“I always say appeal, appeal, appeal, and I wasn’t going to do it,” Michelle says. “I had to tell myself, listen to everything that you preach. You have to do this.”

Tips for writing a successful appeal letter:

  • You will find the company’s phone number and mailing address on the back of your insurance card, on the Explanation of Benefits (EOB), or on the denial letter from the company.
  • Include the patient’s name, the policy number, and the policy holder’s name.
  • Be sure to include your own contact information.
  • Write a concise, detailed note about why you think the charges were denied in error. Be sure to cite the terms of your insurance policy that apply to the situation.
  • It helps to tell your own story, but keep it brief.
  • Include a photocopy of any documents that will support your argument, including the EOB with details of the denial. If this is not possible, provide the date on the denial letter or EOB, what charges were denied and the provider who was supposed to be paid, and why (if you know) the charges were denied.
  • Always keep dated notes, receipts, correspondence, and other documentation of your interactions with the insurance company and/or the hospital or provider.
  • For insurance companies, check your EOB to find out the procedure for submitting an appeal, and be sure to follow these guidelines.  
  • Be a pest. Timeframes vary for each plan and provider, but if you haven’t heard back within about two weeks or the time frame specified in the EOB, call to be sure your materials have been received and show in their system.

CSI Pharmacy has patient advocates who can help you navigate this and other health insurance challenges. We offer this service regardless of whether or not you are a CSI Pharmacy patient. Drop us a line at [email protected].

Advocacy IG Therapy

Don’t Take No for an Answer

Karen has struggled for many years with intense pain and muscle weakness, symptoms of chronic inflammatory demyelinating polyneuropathy (CIDP). This rare nerve disease causes gradually increasing loss of sensation, numbness and tingling, intense pain, and weakness in the extremities. For the last two years, though, Karen has been doing well with monthly infusions of intravenous immune globulin (IVIG) therapy.

Now, however, Karen is terrified that this life-saving treatment will be yanked away from her, not by her doctors, but by her health insurance company.

Karen receives IVIG infusions at home through an independent specialty pharmacy. But after every monthly treatment, she receives a letter from her insurance company’s pharmacy benefits manager (PBM) telling her that her plan requires that she obtain this medication from their preferred specialty pharmacy.

“We’ve just been living with this every month,” Karen’s husband David says. “It’s so nerve racking. We’re always afraid that they will deny coverage and we will get a bill for thousands of dollars.”

This scenario is happening more often lately, according to James Sheets, CEO of CSI Pharmacy, a small, independent specialty pharmacy that caters to patients who use IVIG. Between five and ten percent of new referrals to his pharmacy are rejected by the patient’s insurance plan because of preferred pharmacy limitations.

“The thing is, this is not always true,” James says. “Even when the claim is denied, we have to do some investigating to see what the truth really is. Often, we are, in fact, able to provide services to these patients.”

So far, Karen is still able to get her treatments through her pharmacy of choice. But last month the PBM, a middleman in servicing pharmacy benefits for health insurance companies, stepped up the pressure. In a letter she received, they stated that there was a nationwide shortage of IVIG and again stated Karen was required to switch to their preferred pharmacy.

Someone from the preferred pharmacy even followed up with a phone call out of the blue, insisting that her health plan would not pay for the treatment if she didn’t get her medication through their company, a large, nationwide chain that is financially linked to both the insurance company and the PBM.

“IVIG is extremely expensive,” Karen says. “There’s no way we can pay for it ourselves. They’ve been writing these letters and now they’re calling me. I’m terrified! These people have no concern for my diagnosis or my medical care.”

While plasma donations decreased last year as a result of pandemic restrictions and many expect some immune globulin (IG) products to be in short supply, an IG shortage has not yet materialized. In fact, the only agency authorized to make a declaration of a drug shortage is the Food and Drug Administration (FDA), and to date no such declaration has been issued for immune globulin.

“It’s just wrong that there is an IG shortage,” James says. “Even if there were, the pharmacy in question would not be the only place that has availability of IG products. In fact, patients at small pharmacies like CSI Pharmacy would be more likely to be protected than those at a large national chain pharmacy.”

For patients like Karen who might be feeling more pressure to change to a new pharmacy for specialty medications like IVIG, James has a few suggestions. For starters, if you are already receiving services that you are happy with, don’t automatically agree to change.

“Be an advocate for yourself,” James says. “Tell your plan, look, I have been stable with my current pharmacy. I’m happy with the services they provide. I have a good relationship with my infusion nurse. I do not want all that change, and I would like to opt out and continue to use my current provider.”

It’s also a good idea to call your specialty pharmacy’s patient advocate and let them know what’s going on with the insurance company. You have a relationship with the people at your pharmacy, and they can do the necessary investigating to see if anything has changed with your coverage.

As Karen and David found out when they called their specialty pharmacy, the insurer was continuing to cover the cost of Karen’s infusions, despite the threatening letters they were sending to her. And her pharmacy had no intention of billing her for anything more than her copay.

If you have Medicare and your IVIG is covered under the Medicare Part D drug plan, you are protected against this practice. Language in the Medicare legislation specifies that patients can choose to get their medications from “any willing provider.” So by law, insurers are not allowed to force patients to a certain pharmacy.

“I believe that patients deserve to have the power to make their own health care decisions,” James says. “That’s when the best care takes place. I hate to see patients being forced, against their will, to use specific pharmacies simply as a business decision. The problem with that is there’s no incentive for the big chain pharmacies to do a great job, because when patients don’t have a choice, they never have to make patients happy in order to keep their business.”

CSI Pharmacy would like to know if this sort of pressure to change pharmacies is happening to others. If you’ve received communication from your insurance plan or their pharmacy benefits manager urging you to move your care to their preferred specialty pharmacy, please drop us a note at [email protected].

Health Information Patient communities

COVID Vaccine and Our Patient Communities

Across the country we are starting to see the light at the end of the tunnel as the rollout of COVID-19 vaccines has begun. For many of our patients with primary immunodeficiency diseases or autoimmune conditions, however, getting vaccinated is not a straightforward decision. They have lots of questions and must weigh carefully a number of considerations.

Immunologist and rheumatologist Dr. Terry Harville has some concerns, too. “There are questions in my mind that haven’t been fully answered,” he says about the new vaccines that have recently been granted emergency use authorization by the Food and Drug Administration (FDA). “And I’m worried that there will be unintended consequences.”

The fact that we have only two months’ worth of safety data from the clinical trials testing these new vaccines from Pfizer/BioNTech and Moderna leaves many medical professionals worried about longer-term effects. Others are unsure about how the vaccines will react in patients with rare autoimmune and primary immunodeficiency diseases, because testing did not include people who live with these conditions.

Despite these concerns, Dr. Harville—along with most other healthcare practitioners—stresses that most people should still get the vaccine. Because when hundreds of thousands of people get COVID and one or two percent of them die, the statistics overwhelmingly support COVID-19 vaccination.

Dr. Harville, who is a professor of medicine at the University of Arkansas for Medical Sciences and an expert in primary immunodeficiency disorders, offers some guidelines for those who are trying to make a decision about the vaccine and might be at greater risk for complications from it.

If you have a primary immunodeficiency (PI) disease, you probably already know that you need to be careful about taking immunizations, especially if they are made with live virus. The COVID-19 vaccines that are currently being administered, however, are not made with live virus. They are created from a man-made part of the virus’s genetic code called mRNA. This means they are safer for those who are unable to take live virus vaccines.

With a few exceptions, Dr. Harville says, “It is the general consensus that we don’t see any reason to not vaccinate those with primary immune deficiency diseases.”

One exception is interferonopathies, IDs associated with dysfunction in components of the immune system called interferons. Another exception is CTLA4 deficiency. These are conditions in which patients tend to develop autoimmune disorders. Dr. Harville recommends that individuals with these types of ID should probably not get the currently available COVID vaccines. While there is no data to support this at this time, there is concern among immunologists that vaccination in this group of patients may trigger an overly aggressive immune response that would be harmful. As more data becomes available, better recommendations will be forthcoming.

If you use immune globulin therapy, there appears to be no reason you shouldn’t get the vaccine. In fact, even if you get the disease, you may actually be better off than others.

“What’s interesting is,” Dr. Harville says, “if you look at SARS-CoV-2 infection in patients with antibody deficiencies—whether that’s X-linked agammaglobulinemia (XLA) or common variable immunodeficiency (CVID)—when these patients are receiving appropriate immunoglobulin (IG) replacement therapy, they tend to have milder disease.”

Intravenous immunoglobulin (IVIG) has even been used, in some cases, to treat COVID-19 infection. While clinical trials to prove effectiveness are still ongoing, some physicians believe IVIG does decrease the risk of severe complications. IG manufactured from the plasma of people who have recovered from COVID-19 infection is also being tested as a treatment.

If you have had a severe reaction to immunizations in the past, this may be a reason to opt out of getting the COVID vaccine. This includes those who have a primary immunodeficiency disorder and developed the infection after receiving a vaccine. It also includes autoimmune disease patients who have experienced a severe flare of their symptoms after a vaccination.

In the 1976, there was a rise in cases of the autoimmune condition known as Guillain-Barré syndrome (GBS) that was thought to be triggered by the swine flu vaccine given that year. This was an inactivated virus vaccine, not the type of mRNA vaccine we now have with COVID. Nevertheless, if you’ve had GBS in the past, be sure to let your healthcare provider know this, as it may be a consideration for whether or not you should get the COVID vaccine.

During the COVID vaccine clinical trials, a very small number of participants who received the Pfizer vaccine developed a severe, life-threatening allergic reaction. Since then, others have also had what is called an anaphylactic response soon after getting vaccinated. If you have ever experienced shortness of breath, tightening in the throat, swollen lips or face, or other severe allergic symptoms, you should probably not get this vaccine in particular. (Other vaccines using whole virus are currently in development and will likely be safer.) Anyone who does get a COVID vaccine should be observed for at least 15 minutes and be sure the healthcare personnel administering it have emergency equipment needed to respond to anaphylaxis.

Regardless of your disease, everyone can reduce their own risk. Dr. Harville stresses that, even if you get vaccinated, it’s still important to wear a mask, wash your hands, and maintain physical distance from others.

“Ultimately whether you take or do not take the vaccine is an individual patient decision,” Dr. Harville says. “This should be made after weighing all the risks and benefits and based on a discussion with your physician.”

We highly recommend that you learn more about the risks and benefits of COVID-19 vaccination as it relates to your particular situation. The Centers for Disease Control and Prevention (CDC) offers these guidelines for COVID-19 vaccination for those with underlying medical conditions. In addition, a number of disease organizations offer educational programming about the impact of the virus and the vaccine on specific disease conditions.

Please also see disease-specific statements about COVID-19 vaccines from these patient organizations:

Guillain-Barré syndrome – GBS|CIDP Foundation

Immune Deficiency Foundation

Myasthenia Gravis Foundation of America

The Myositis Association

Myositis Support and Understanding

Platelet Disorder Support Association