A Little Known Resource to Help Those with Chronic Health Conditions

Jen French
Neurotech Network
Published in
6 min readJul 30, 2021


Living with a chronic health condition is expensive. Over the last month, I’ve heard this repeat several times. It’s true. According to the National Spinal Cord Injury Statistics Center reports that living with tetraplegia costs upwards of $120,000 per year. There are similar costs for other long-term neurological conditions like stroke, traumatic brain injury or multiple sclerosis. Access to the latest medical developments can be stifled when factoring in the cost of care.

The rapid developments in neurotechnology have sparked excitement for those who follow the industry. The emergence of brain interfaces, the expansion of new stimulators for pain, and even the introduction of new neural prosthetics coupled with sensing and stimulation technology have all demonstrated a potential to change the way people living with neurological conditions can benefit from the advancements of science and technology. However, the excitement falls short with marketplace realities of health economics and access, including the financial barriers.

Image by Gerd Altmann from Pixabay

One of the biggest obstacles in neurotech is payment for the device or treatment. On the device developer side, it is the attempts to gain reimbursement from the third-party payers, like Medicare or the VA, in an amount that is sustainable for the business. From a device user perspective, the obstable is paying for a treatment or therapy that is financially feasible. In the U.S., the average spinal cord stimulator can cost over $30,000 with annual maintenance of over $5,000 (1); a cochlear implant can cost about the same with further out of pocket costs for audiology (2); a simple drop-foot stimulator maybe $5,000 out of pocket (3). For people living with chronic neurological conditions like fibromyalgia, multiple sclerosis, Parkinson’s disease, or even paralysis, financial access to the technologies is a big hurdle.

High insurance premiums, high co-pays, outrageous deductibles, or a combination of any of these can plague those living with chronic neurological conditions. According to the CDC, 90% of the $3.8 trillion annual health care expenditures are for people living with chronic and/or mental health conditions. A paper published in the journal JAMA Network in 2011 reported that over 100 million Americans are living with at least one neurological condition. Pulling this together, the U.S. Census Bureau published a report earlier this year about medical debt in America. According to their report, more than 1 in 4 households consisting of at least one member with a disability had medical debt. An overwhelming amount of people either fear medical debt or experience medical bill bankruptcies due to a chronic health condition.

A Support Alternative

There is an alternative in the form of non-profit organizations like the Patient Advocate Foundation, HealthWell Foundation, and the Patient Access Network Foundation. These organizations are supported by a combination of funds from public and government agencies, research and academic institutions, private foundations, public charities, and corporate donations. For the PAF, in particular, their mission is to provide case management services and financial aid to Americans living with chronic, life-threatening, and debilitating illnesses. Organizations that provide these services have different eligibility criteria which can include neurological, autoimmune, and psychological conditions as well as chronic overlapping conditions. Their services can be wide ranging but the focus is still financial access to care.

Assistive Services

These non-profit service providers offer an array of services to help those in need. Program specifics vary from organization to organization but here is an overview of what the Patient Advocate Foundation offers.

Case Management is their hallmark service. With a team of case managers, they provide direct assistance to their constituents. These trained professionals help to access physician-prescribed healthcare services. For those with insurance, their case managers will help navigate the system, gain prior authorization, and assist with the seemingly never-ending appeal process. They will also go one step further by helping people who are in debt-crisis situations rooted in run-away out-of-pocket medical expenses by locating and enrolling them in safety net programs.

Co-Pay Relief programs are centered around financial relief for those with insurance and who live with a qualifying chronic condition. Assistance can take the form of cost-sharing, co-insurance, and even co-payment relief. This direct financial assistance is for qualified treatments but not for durable medical equipment, such as walkers or shower chairs. Alternatively, neurotech devices that deliver treatment are typically not considered under the DME restriction.

Financial Aid Funds provide direct small grants to cover support needs through partner financial aid programs. Funds provided to those who qualify can help with medical expenses as well as non-medical expenses like transportation, housing, utilities, and food assistance.

Education and Empowerment Initiatives are directed toward people living with conditions, caregivers, and healthcare providers. Services provided are designed as tools for guidance and self-advocacy. Information is disseminated in the form of resource libraries, educational webcasts, and the National Financial Resource Directory. NFRD is one of the most popular education tools with more than 773,000 matching resources last year. The directory holds national and regional resources for financial and care facilities based on the entered search criteria for those who are uninsured as well as those who are under-insured.

Making an Impact

PAF services are designed to help people but do they really have an impact? For those living with chronic health conditions, the results are what really counts. In 2020 alone, PAF had a case count of over 190,000 and increasing their total people served to 1.5 million. In response to the specific needs of COVID, they created the COVID Care Recovery Fund helping more than 23,000 people. Health inequities are prevalent in the U.S., particularly for chronic conditions. With a high premature mortality rate due to the social determinants of health, PAF prioritized the need to reach underserved populations in the African-American, Hispanic, and Native American communities. By changing the philosophy of their outreach, PAF has grown their minority community served to 28% of the patients. There is still more work to be done.

A sister organization is the National Patient Advocate Foundation based in Washington, DC. NPAF is an affiliated advocacy organization that promotes access to affordable, quality health care for people living with chronic conditions. Moreover, they push for changes in health care policies and equitable access to the health care system. Partnering with advocacy groups and community-based programs, their efforts work to protect patient rights, advance patient-centered care and work towards an affordable health system for all Americans.

Other Assistance Organizations

PAF is not the only non-profit organization of its kind. Some others are listed below. The services may differ from those described above and many offer programs which may be for a specific disease, condition, or need. The U.S. healthcare system is complex and difficult to navigate. These complexities can seem exponential for those living with complex neurological conditions. Support organizations like PAF provide some relief but there still needs to be a collective effort among all stakeholders to change access to established and emerging neurotechnologies.

Support organizations

Special thanks to the Patient Advocate Foundation for their help with this feature. More information about the neurotech devices for various neurological conditions and other network resources may be found on the Neurotech Network website. Follow us on Twitter or LinkedIn.


(1) Kumar, K., & Bishop, S. (2009). Financial impact of spinal cord stimulation on the healthcare budget: a comparative analysis of costs in Canada and the United States, Journal of Neurosurgery: Spine SPI, 10(6), 564–573. Retrieved Jul 14, 2021, from https://thejns.org/spine/view/journals/j-neurosurg-spine/10/6/article-p564.xml

(2) Babyhearing.org study: https://www.babyhearing.org/devices/cochlear-implant-cost

(3) National MS Society Consumer Alert: http://www.nationalmssociety.org/nationalmssociety/media/msnationalfiles/brochures/article-two-new-devices-for-foot-drop.pdf