Tag: health insurance

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Advocacy

Uninsured? Healthcare Help is Available

Professional support when you need it the most

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. 

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Advocacy

Copay Accumulators Raise Barriers to Care

pharmaceutical equipment on money showing the value of CSI pharmacy

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].

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Advocacy

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].

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Advocacy Patient stories

Buyer Beware

Successful client photo

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. 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.