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National Gaucher Foundation’s CARE Programs

It’s no secret that living with Gaucher disease can be pricy. Enzyme replacement therapy (ERT), the mainstay of Gaucher disease management, runs between $139,000 to more than $300,000 each year(1). Patients often encounter unexpected expenses, including fees for emergency services and travel costs, during the course of their treatment.

Many people living with Gaucher disease face a tremendous financial burden while trying to maintain optimal health. It’s possible to live a normal life with Gaucher disease, but patients must receive appropriate treatment on a consistent basis. Almost 25 years ago, NGF implemented two programs – CARE and CARE+ – to help people living with Gaucher disease pay for some of the expenses incurred during the course of diagnosis and treatment.

“The choice to pursue treatment can help people with Gaucher disease feel their best and live as normal a life as possible. We strive to help people obtain the financial resources they need to achieve this goal,” says Barbara Lichtenstein, Director of NGF’s CARE Programs.

History of the CARE Programs

In 1993, NGF created the CARE program after identifying an enormous need within the Gaucher community for financial assistance in paying insurance premiums, especially when it comes to obtaining much-needed ERT medications.

“The first (ERT) drug had just been approved, and it was very expensive,” says Lichtenstein. “The most economical way to help people pay for this drug was to help them pay for insurance. This program was set up to help people afford their insurance premiums so, in turn, they could receive their life-sustaining drug.”

Five years after launching the CARE program, the CARE team implemented CARE+ to help patients pay some of the out-of-pocket expenses that commonly occur in the course of Gaucher disease treatment. “We identified certain things that would also help patients with Gaucher disease that were not covered by insurance, so we included those items,” explains Lichtenstein. Many of these out-of-pocket expenses, such as travel expenses, over-the-counter medications, and alternative therapies like acupuncture, can rack up costs for Gaucher patients.

Initially, NGF was able to help 30 to 40 patients each year through the CARE and CARE+ programs. As funding and support for the financial assistance programs increased, NGF expanded their offerings to more patients and now serves more than 200 people each year. In July 2017, the CARE program hit an extraordinary milestone by providing financial help to their 1,000th patient.

CARE Program Application Process

NGF has made the CARE and CARE+ program application process as simple as possible. The first step in the process is to complete the program registration form, which allows interested people to complete an online application for financial assistance. Applicants must submit basic demographic and financial information for consideration. Both the CARE and CARE+ programs are need-based programs, meaning patients must demonstrate extraordinary financial hardship that prevents them from being able to afford insurance premiums or other Gaucher disease-related expenses.

“We accumulate (an applicant’s) data about applications and take a look. We don’t ask for specific copies of bills, but we do need a list of monthly expenses, like rent and electricity, that can be added up from there,” says Lichtenstein. “Then, our Independent Review Board looks at the numbers to decide whether the person qualifies for a grant. The Board uses income tax returns to verify what each applicant brings home, and how that compares to the patient’s monthly expenses. However, if an applicant is under 400 percent of the poverty level, it’s an automatic grant.”

“For people that are over 400 percent of the poverty level, the Board sits down and reviews their actual monthly financial information and what they’re asking for help with, which is usually their insurance premiums,” she adds. “The Board makes a decision from there. In our opinion, you can’t set an arbitrary dollar amount and say ‘Ok, if you make over this, you can afford (your premiums). Some of the insurance premiums are unbelievable, and it’s just not affordable.”

Generally speaking, there are eight Board meetings each year to review program applications. Grants are distributed from January 1 to December 30 and must be renewed each year.

Looking Ahead at What’s to Come for the CARE Programs

Each year, NGF secures funding for the CARE programs through both private donations and grants for Gaucher disease. As a result of increases in funding and interest, NGF is developing a new program to help pay for patients’ deductibles and co-insurance, which is the percentage they must pay for their treatment.

The new program is scheduled to begin in 2018 pending approval from the Office of Inspector General, U.S. Department of Health and Human Services. It is another piece to the financial puzzle that patients must face when living with Gaucher disease.

“What we’re here for is to help remove financial barriers to treatment,” says Lichtenstein. “We try to make the process as simple as possible for patients, physicians, and other people so that people with Gaucher disease can receive life-sustaining treatment if they desire. It’s all about removing barriers to treatment and providing choices.”

Sources:

  1. Van Dussen L, et al. Cost-effectiveness of enzyme replacement therapy for type 1 Gaucher disease. Orphanet Journal of Rare Diseases. 2014;9:51. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4022049/. Accessed June 23, 2017.

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