Lyme disease, if treated early, can usually be successfully eradicated with antibiotics. Unfortunately, as many patients know, if it is not diagnosed early, it can cause debilitating sickness and a myriad of symptoms that are much harder to treat. And not all treatments are covered by insurance, making the whole experience potentially very financially as well as physically draining.
One of the questions we often get is about financial support. Bay Area Lyme Foundation is a research organization, hoping to accelerate the discovery of new, more effective — and less costly! — treatments and diagnostics, but unfortunately is not able to provide support for individual cases. However, there are other places to go for help. There are many organizations doing great work to help support those suffering from Lyme, in fact, a growing number as awareness spreads about this pernicious disease. What follows is a partial list, if you know of others, please do share.
- Benefits.gov — official benefits website of the US government, offers a directory of healthcare (and other) programs to help patients navigate to federal programs and services, as well as a Benefits Finder searchable database
- ClinicalTrials.gov, a service of the National Institutes for Health — lists publicly and privately supported clinical studies actively recruiting patients
- “Direct access labs,” like DirectLabs — which provide discounted online blood and laboratory testing, including the Immunoblot for Lyme
- Health Resources and Services Administration (HRSA) — allows you to search by zip code, city, or state for healthcare clinics and centers offering free services
- InsureKidsNow — a US government-managed site providing information about Medicaid and the Children’s Health Insurance Program (CHIP) for families seeking health assistance for children and teens
- Lyme Disease Association LymeAid 4 Kids — provides individual grants to families of young patients (under 21) who do not have insurance / insurance coverage for treatment
- Lymelight Foundation — supports anyone under the age of 25 with demonstrated financial need that is suffering from Lyme disease and under the care of a qualified “Lyme-literate MD, ND, DO, or NP.”
- Lyme Test Access Program (Lyme-TAP) – reimburses up to 75% of out-of-pocket costs for testing from qualified labratories.
- Needy Meds — offers a free drug discount program as well as a directory of free and low cost clinical and medical assistance programs
- Pharma Companies — many pharmaceutical companies have direct patient assistance programs that will provide access to their medicines for those with financial hardship. Organizations like RxAssist offer directory referrals to some of these programs. You can also try going directly to the Rx companies, most of whom have information on their websites about how to apply for their assistance programs [for example, see GlaxoSmithKline’s GSKforYou]
- Prescription Discount Programs — many insurance providers partner with prescription programs offering discounted medicine and some retail pharmacies also offer the same (e.g., Walgreens, Costco). Check with your insurance company or preferred pharmacy.
- RxAssist – provides a directory of pharmaceutical patient assistance programs offering free medication to those that can not afford treatment
In addition, you may want to consider the following options:
- Crowdfunding. See this inspiring effort by one enterprising daughter to raise funds (over $16,000!) on Indiegogo to support hyperbaric and other treatments for her mother’s Tick-Borne Relapsing Fever (TBRF); the campaign was recognized as one of the most unique (and successful) on the platform
- Personal fundraising — The Living Lyme website has many ideas for how to raise money at a grassroots level, including setting up a donation site, hosting an auction or sale, or organizing a walk or event.
- Travel Support: Angel Flights and Mercy Flights — Air Care Alliance is a database of pilot organizations that will provide flights or aviation services for patients in need, including Angel Flight and Mercy Flights
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Please note: Bay Area Lyme offers this list as a service to the community and is not officially endorsing any of these organizations. Please refer directly to the organizations and sites listed for the most current information.