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Health insurance can be complicated, especially if you have a rare or chronic disease. Figuring out if and how you can see a certain specialist or how to afford expensive drug therapies can be exhausting,and understanding insurance lingo can feel like learning a different language. Luckily, there are resources out there that can help rare patients navigate health insurance, and we’re going to share them with you in a series of posts called Health Insurance 101. This post focuses on what to do if you have trouble affording medications or necessary medical equipment.

Global Genes recently held a webinar on February 1st exploring health insurance coverage- or lack thereof- for rare patients. One of the panelists was Dave Caponera, Vice President of Patient Engagement and Access Support at Catalyst Pharmaceuticals. Dave shared some useful information about patient access programs, which are often offered by pharmaceutical companies to help patients gain financial access to their medications.

Many pharma companies have access programs that help patients who can’t afford their prescribed treatments. There are also third party programs to help with prescriptions as well. While qualifying for some of these programs might not always be easy, they can be a huge help to patients who need it. We pulled together a list of Patient Assistance Programs that provide financial assistance for drugs included on FSR’s SAB-approved list of treatment options for sarcoidosis:

Assistance Program Drug Therapies Included
AbbVie Patient Assistance Foundation Adalimumab/Humira
Amgen Safety Net Foundation Etanercept/ Enbrel
A.S.A.P.- Acthar Support & Access Program H.P. Acthar Gel
AZ&Me Prescription Saving Programs Symbicort
Celgene Patient Support Thalidomide/Thalomid
CSL Behring Patient Assistance Program IVIG/ Privagen/Carimune
Genentech Access to Care Foundation Rituximab/Rituxan
Horizon Patient Assistance Program Prednisone/Rayos
Johnson & Johnson Patient Assistance Foundation, Inc. Golimumab/Simponi
Pfizer RxPathways Methylprednisolone/Medrol
Upsher-Smith Pentoxifylline/Pentoxil
Xubex Pharmaceutical Services Azathioprine
Mycophenolate mofetil


In addition to the above programs, there are also local, state and nation-wide programs. Some are through the government, and some are third party, nonprofit organizations. This can be especially useful for patients who need assistance affording multiple medications. They can also help manage your enrollment in assistance programs. Some independent programs include:


Also, make sure that you talk with your doctor about generic prescriptions, they’re the same drug but at a much lower cost!


Research for this article came from the many resources cited above and was tailored to sarcoidosis patients. FSR’s partner Global Genes also has many great resources for rare disease patients, including one of their RARE Toolkits, Navigating Health Insurance.

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