CSI Pharmacy stories

Another Set of Trained Eyes

Dr. Ed O’Bryan isn’t one to sit around. In fact, he stands—dances, even—even when he’s working at his desk.

He practices as an ER doctor, teaches emergency medicine, started and serves on the board of trustees for two nonprofit organizations, and founded a number of health-related companies, several of which he still serves as a board member for. He has a long list of peer-reviewed publications and given countless talks, including a TEDx talk in Charleston. And he’s always looking for better ways to provide the absolute best healthcare for patients. 

In August, Ed arrived at CSI Pharmacy to serve as our first chief medical officer. 

“I’ve always had an entrepreneurial mindset,” says Ed, who in addition to achieving a medical degree from the Medical University of South Carolina also earned an MBA from the University of Tennessee.

As CSI Pharmacy grows, expanding services across the country and growing the number of therapies we now offer, Ed provides clinical oversight to ensure we continue to provide the best care for those who depend on these treatments. He works with pharmacists and nurses to monitor therapies and patient outcomes, and he coordinates communication with healthcare providers so they are continually informed about their patients’ progress.

“We work with complex diseases,” Ed says. “They’re difficult to treat, and every patient is different in how they respond. Adding that extra layer of clinical oversight, whether it’s for patient questions or challenges that our nurses may have, just makes us better and further sets us apart from other pharmacies.”

Among his priorities is developing a digital evaluation process to monitor the impact of treatment on both the patient’s condition and quality of life. Gathering this data over a period of time can help pharmacists and physicians understand what’s working best to improve patient outcomes. It may even add to the scientific understanding of diseases such as myasthenia gravis, myositis, chronic inflammatory demyelinating polyneuropathy (CIDP), primary immunodeficiency diseases, and other conditions we treat.

Ed also wants to create a physician advisory council for CSI Pharmacy. Having a relationship with a group of specialists and researchers will help us stay on the cutting edge of new and expanding therapies that can best serve our patient communities.

“We want to show that patient outcomes are better when they get their infusions at home versus going to a hospital setting,” Ed says. “Having an extra set of trained eyes on our patients will help to make sure that their complex and chronic diseases are being managed in the best way possible. This can really take us to the next level.”

When he’s not working, Ed enjoys hanging out with his wife, Claire, a nurse practitioner, and their daughters, Evy (age 7) and Tillie (age 5). And while surfing is one of his favorite pastimes, he doesn’t get to do this much since he moved from Charleston, South Carolina to Nashville, Tennessee.

“I just want patients to know that that I’m here to be a resource for them,” Ed says. “These disease states are so complex and challenging from a lot of different standpoints. I’m really excited to be an advocate for them.”


Uninsured? Healthcare Help is Available

David didn’t have health insurance when he was diagnosed with diabetes recently. The shock of having to cope with a severe chronic condition was bad enough, but now he was faced with having to pay nearly $700 per month just for the medication to treat his disease. Along with this, the American Diabetes Association estimates the added annual expense of treating this chronic condition is almost $18,000. With a family income of less than $24,000 a year, there was no way David would be able to afford this condition.

Unfortunately, when he turned to the two health insurance options available for low-income individuals, he fell through the cracks. Medicaid would cover his wife, and the Children’s Health Insurance Program (CHIP) would cover his two young children. But the Medicaid program is administered by states, each of which has their own rules and eligibility criteria. In Texas, a man like David who is not disabled and is under the age of 65, does not qualify for benefits. He could get coverage through the Health Insurance Marketplace Exchange, but it would cost him more than $300/month. This too was unaffordable.

When you’re in a situation where you need life-saving therapy, but you can’t afford insurance coverage, there are a variety of resources available to help cover the costs. Sometimes we just need help finding them.

While these resources may not be available for all chronic disease conditions, especially those that are rare, you may be surprised how much help is out there if you know where to look.  

Confide in your healthcare provider. This will help providers understand your needs better so they can help you stay healthy. For example, they may be able to prescribe a generic treatment or an alternative drug that is less expensive. Some may also be able to provide resources and suggestions for other options. David’s doctor, for example, gave him drug samples that could tide him over until he found a more sustainable way to pay for treatment.

Look for manufacturer assistance programs. Many pharmaceutical companies have programs that can provide financial assistance for the uninsured and copay assistance for those with insurance who are still unable to afford their medication. You can find this information by doing an internet search for the company that makes your medication, the name of the medication, and the term “patient assistance” or “financial assistance.”  

When David explained his situation to the patient care coordinator at the company that makes his medication, he was able to apply for and receive his medication free for several months until he could find a long-term solution.

See if you qualify for Social Security disability. If your disease makes it impossible for you to work, consider this option. The process is not easy or quick, but if you are accepted for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI), you will also qualify for Medicaid. The added good news about this program is Medicaid benefits will start retroactive to the date you applied for disability. Here’s the Social Security link.

Look for local resources. Local health departments and federally funded health clinics can help those with chronic conditions find medical care at little or no cost. The following directories can help you locate resources in your community:

Explore patient support groups. Nonprofit organizations exist for nearly every chronic disease. These groups can put you in touch with others who can provide support and real-world experience of living with your disease. Most also share evidence-based information and the latest research about how to live well with the condition. In addition, a number of these organizations also have an assistance fund to help those in financial need afford the care they need.

CSI Pharmacy’s website provides support group contact information for many of the patient communities that we serve.

For other conditions, do an internet search using terms that include the name of the disease and “support group.”

Look for help through charity organizations. A variety of nonprofit foundations provide financial assistance grants targeting specific conditions or medications. The following are organizations we are aware of that provide this sort of help. You may find others by searching for “financial assistance” and the name of your disease or medication.

  • Accessia Health (formerly known as Patient Services, Inc.) helps with insurance copays and premiums, ancillary costs of care, travel expenses, and infusion costs for a range of chronic and rare diseases. They also provide free legal help for those trying to navigate the confusing systems of disability and health insurance.
  • The Assistance Fund provides financial assistance for copayments, coinsurance, deductibles, and other health-related expenses for 80 specific disease communities. Be aware that this source will only support medications that are FDA-approved for the condition you have.
  • Healthwell Foundation provides financial assistance to help with prescription copays; health insurance premiums, deductibles, and coinsurance; pediatric treatment costs; and health-related travel costs. Their list of disease funds is limited, and they often exhaust available funds quickly, so you may need to keep checking to see if funds relevant to you are available.
  • National Organization for Rare Diseases (NORD) provides financial assistance to help pay for medications, insurance premiums and co-pays, diagnostic testing, and travel for clinical trials or consultation with disease specialists. The list of diseases with which they work is limited to specific rare diseases. They also have a list of resources that provide financial assistance beyond rare disease.
  • Patient Advocate Foundation provides qualified patients with financial assistance for co-pays and co-insurance for prescription drugs for those living with specific disease states. In some instances, assistance with insurance premiums and/or ancillary services associated with the disease also may be available. Individuals must have health insurance, have a confirmed diagnosis, live in the US, and meet certain income limits.

These resources are provided as a service to our patient communities. CSI Pharmacy does not certify or vouch for any of the organizations listed here nor do we benefit in any way from providing this information. If you choose to access these resources, please review the organization’s information carefully before committing to its services or benefits. 


Copay Accumulators Raise Barriers to Care

Alyse has always been the one to come down with every infectious disease that’s going around. As a child, she often spent much of the winter with colds, sinus infections, and ear infections, which were treated with antibiotics. When she was hospitalized with her second bout of pneumonia in one year, her primary care doctor referred her to an immunologist who diagnosed her with common variable immune deficiency (CVID).

CVID is one of more than 450 rare, chronic conditions called primary immune deficiency diseases (PIDD) that are caused by a hereditary defect in the way the body fights infections. For PIDD patients, a part of the immune system is missing or doesn’t function properly, opening the person to all types of potentially dangerous infections.

When Alyse was finally diagnosed properly, her immunologist started her on immune globulin (IG) therapy. These treatments, which she gets intravenously every four weeks, replace the important immune proteins her body is missing. Now, Alyse can live more normally without fear of contracting the kind of severe infections that once made her chronically sick.

Immune globulin is made from donated human plasma and is very expensive. A single infusion can cost as much as $20,000. Until recently, Alyse’s insurance plan covered much of the cost, assessing a manageable $50 per month as a copayment. Over the last few years, however, the out-of-pocket cost for her IG therapy has increased due to a higher deductible plan. Alyse now has a $5,000 deductible before her insurance will cover any of her IG therapy in addition to copays she has to pay until she meets her out-of-pocket maximum of $10,000.

Still, she’d been able to afford her out-of-pocket costs due to the copay assistance offered by the drug manufacturer. For PIDD, the drug manufacturers have copay assistance programs from $2,500 to $10,000 a calendar year which helps her cover the costs

While it was still a struggle, this copay assistance helped Alyse afford the copay for the first few months of the year. This was because the amount paid by the manufacturer’s assistance program counted toward her insurance plan’s $10,000 annual out-of-pocket maximum, which includes all her copays and coinsurance and the deductible she must pay each year. Once she reached this maximum, the plan would pick up the entire cost of her treatments for the rest of the year.

A New Surprise

This year, however, without informing her, Alyse’s insurance plan instituted a copay accumulator program (also called a copay adjustment or maximizer program). This is an insurance industry trend intended to encourage patients to choose lesser expensive or generic medications rather than the more expensive brand names. Unfortunately, there are no less expensive alternatives for this essential treatment for PIDD and many other diseases.

With the copay accumulator program, copay assistance from a third party, like the drug manufacturer, a charitable organization, or a patient support group, is not counted toward a patient’s out-of-pocket maximum. That means the assistance Alyse receives to offset the monthly cost of her treatments no longer counts. After her assistance is used up, she is still responsible for the full amount of the copay charges until she reaches the annual out-of-pocket maximum.   

This has sent Alyse into a panic. There’s no way she can afford to pay $5,000 deductible all at once, as well as the additional copays until she meets her out-of-pocket maximum for her treatments. And without the treatment, she’s terrified that she will again fall victim to chronic, debilitating infections.

Many patients depend on the assistance they get from manufacturers and charities to afford the high cost of specialty medications. Copay accumulators limit a patient’s access to these life-saving therapies. They are extremely harmful to patients, both financially and in terms of their health and wellbeing.

Legislation that Will HELP

Many states and the federal government are now looking at this insurance industry practice and working to eliminate copay accumulator programs. A dozen states and Puerto Rico have already banned the practice. At the federal level, Congress is moving to control high out-of-pocket health insurance costs with the Help Ensure Lower Patient (HELP) Copays Act, a bipartisan bill (HR 5801) introduced in the House of Representatives last November.

The Immune Deficiency Foundation (IDF), the National Hemophilia Foundation, the National Organization for Rare Disorders (NORD), and more than 60 other organizations supporting serious and chronic disease patients have come together to form the All Copays Count Coalition, an organization committed to eliminating this barrier to care at both the state and federal level. Addressing this issue at both legislative levels is important because some insurance plans are regulated by the federal government, while others are regulated at the state level. 

IDF encourages those who use immune globulin therapy to support efforts to make #AllCopaysCount. They encourage you to contact your members of Congress and let them know that you support the HELP Copays Act. NORD and IDF are also following state-level legislation.

In the meantime, not all health insurance plans include a copay accumulator program. When you sign up for a new plan, it’s important to be sure to look for this restriction in the fine print (or call the company) and choose one that doesn’t restrict third-party copays. This may not be easy to determine. If you need help, our Patient Advocates are available to help you find the plan that’s right for you. Email us at [email protected].


Patient Advocates are on Your Side

We know how hard it can be for those who live with chronic or rare diseases to cope with their health challenges. It can be even more overwhelming when you add on all the other questions about specialist care, health insurance coverage, finances, and so much more. A patient advocate can be a lifeline, helping you find the resources to get the care you need, so you can focus on getting well.

A patient advocate is a person who supports your healthcare journey by helping you work with healthcare providers, insurance companies, employers, case managers, lawyers, and others on issues related to your health. These knowledgeable and committed individuals can help resolve issues around access to care, medical billing disputes, and job discrimination related to your medical condition.

Patient advocates can examine your insurance plan and help you understand your coverage. They can also help you choose a new health insurance policy during open enrollment, work with providers to resolve your healthcare needs, and help you apply for disability.

At CSI Pharmacy, we take patient advocacy seriously, going beyond just working with the individuals for whom we provide therapies. We believe advocacy also extends to providing actionable information for patients and their families. One way we do this is by supporting and promoting the wider efforts of disease-based patient support groups throughout the country.

Our nurses, pharmacists, and patient advocates volunteer to speak at patient support groups, national conferences, and webinars. Through these talks, we educate patients and caregivers on issues such as navigating insurance, tailoring therapies to meet your unique needs, infusing specialty therapies in the home, understanding social security disability, and helping patients choose the best health insurance plan for them.

Another way we advocate for patient communities is by providing valuable resources on the CSI Pharmacy news page. We encourage you to subscribe to this page on our website, where you will receive ongoing information about treatments and wellness, patient stories, provider profiles, insurance, policy issues, and much more. You can sign up here.  

Our quarterly email newsletter also provides important news from the pharmacy as well as links to a broader range of news from around the rare disease community and a seasonal recipe too! You don’t need to be a CSI Pharmacy customer to sign up for the newsletter. And please follow CSI Pharmacy on Facebook, Twitter, and LinkedIn where we also post about issues of interest to the rare disease community.

Our patient advocates are always available for you, regardless of whether or not you are a patient of the pharmacy. To schedule a one-on-one consultation, just email us at [email protected].

Patient communities

Never Say Die

Vickie Henderson is the kind of person you want to have on your team if you want to win. She’s driven. She gives it her all. And she never gives up. But seven years ago, that never-say-die attitude became a liability for her.

Vickie, who is an obstetrician/gynecologist, started noticing her eyes weren’t focusing quite right, especially when she was tired. She told her eye doctor, who kept adjusting her contact lenses, trying to compensate for the blurred vision, but it was never quite right. At home, she would go to bed early, not because she was sleepy, but because she literally could not keep her eyes open.

As it turned out, she had ocular myasthenia gravis (MG), a chronic autoimmune disease that affects the muscles that move the eyes and eyelids. It was a huge surprise, but she refused to see it as a setback. She was training for a five-day, two-hundred-fifty-seven-mile bicycle ride across the state of Missouri, and she was pushing herself. She couldn’t let up now.

“One thing I learned is, if you push MG, it pushes back,” Vickie says. “Of course I pushed it, and six weeks after my diagnosis—just days before the race—it progressed to generalized MG.”

That day of reckoning came at the worst possible time: when she was in the operating room performing a Cesarean section. The muscle weakness of MG started affecting her hands. Still, she kept pushing herself until not only was she unable to hold the instruments properly, but her legs started buckling and she had trouble breathing because her diaphragm was getting weak.

“I was a surgeon in an operating room one minute, and the next I was a patient in a wheelchair on my way to the emergency department,” she says.

Vickie was sent to a larger medical center where she could receive more advanced care. But the neuromuscular specialists at the tertiary care hospital couldn’t figure out what was wrong with her. Even though she already had a diagnosis of ocular MG, she was seronegative. This means that, like 10-20% of myasthenia patients, her bloodwork did not show acetylcholine receptor antibodies. Because this diagnostic test was negative, the doctors didn’t believe her profound muscle weakness was caused by MG.

“They pretty much accused me of faking it,” she says.

She was fifty years old and, thanks to her training for the bike trip, she was in extremely good physical shape. She could do 80 pushups and bike a hundred miles in one day. So when they tested her for strength, she crushed it. But one of the hallmarks of MG is “fatigable” weakness that sets in after you’ve been using the muscle.

“They didn’t test me for fatigable weakness,” she says. “Doctors would come in and they would have me resist, do straight leg raises, do an arm curl. But when they left the room, I couldn’t even get my fork to my mouth. And even if I could, I couldn’t chew my food, because I had weakness in my jaw. So they didn’t take me seriously.”

Talking to support group leaders from the Myasthenia Gravis Foundation of America (MGFA) was one of the things that helped Vickie find her footing again. These were the myasthenia experts she needed, because they too lived with the disease. Not only were they very knowledgeable about how she needed to take care of herself, but they believed her. They reassured her that she was not crazy.

Buoyed by this support, Vickie’s never-say-die attitude became a force in helping her to advocate for herself. She searched both locally and beyond for a doctor who would listen to her and treat her appropriately. She finally found a myasthenia doctor who believed her, but he was 1,000 miles away. This neurologist did electromyography (EMG) studies to measure the electrical activity of her muscles and, backed by the abnormal results, was able to accurately diagnose and treat her.  

Now Vickie speaks out for rare disease patients everywhere, urging them not to give up until they find the care they need. She’s a powerful motivational speaker who uses stories and humor and her own experience to also urge her physician colleagues, even when they don’t understand, to trust their patients and believe their story.

Health Information

Concerns about Coronavirus

Those who rely on specialty therapies like IV immune globulin (IVIG) infusions are understandably anxious about the impact of coronavirus containment measures currently being implemented across the country. CSI Pharmacy’s advocacy team have heard from a number of patients, especially those who get their treatments at infusion centers or hospital clinics, who are worried about the possibility of being exposed to the virus in these facilities.

It is extremely important that you get your IVIG treatments, especially during this time when you need your immune system to be as effective as possible. Patients should not postpone or cancel a regularly scheduled infusion.

We urge you to call your infusion site to be sure they are operating as usual. You can also check in with your physician to ask their opinion about coronavirus containment at your facility.

If, however, you can’t or don’t want to leave home or your usual infusion site is closed, home infusion may be an option. CSI patient advocates are available to help you sort out these access options, including continuing at your current site. If you decide you’d like to transfer to home infusion, we can also help you navigate this process with your physician and your insurance plan.

Regardless of where you decide to have your infusions, CSI Pharmacy wants to be sure no one goes without the treatments they need during this public health crisis. Please reach out to our advocates at [email protected] you have questions or need help accessing care.