Helping Families Move From Hope to Treatment
A new Huntington’s disease treatment can bring hope—and a new set of questions. Where do we start? Will insurance cover it? How do we reach a treatment center? What happens if we cannot afford care?
Take Back Tomorrow HD Foundation is preparing to help families navigate those questions through four areas of service: funding, advocacy, education, and hope.
We are building these programs now so that, as treatments become available, families have somewhere to turn.
Funding: A Path Through Financial Barriers
Our planned funding program will help eligible patients access FDA-approved HD treatment when the cost of care stands in the way.
That may include gaps while insurance coverage is being determined, the waiting period before Medicare begins, unaffordable copays or deductibles, or a lack of insurance coverage altogether. The assistance available will depend on the treatment, our final program policies, and available funds.
Applications are not open yet. Once the first HD treatment receives FDA approval, we will begin accepting applications through an online form on our website.
With a physician’s order for an FDA-approved HD treatment, assistance will be provided based solely on queue position and availability of funds. We will not means-test applicants, rank them by disease progression, or select whose need is more deserving. Treatment decisions belong to patients and their treating physicians.
Advocacy: Making Access a Priority
Approval is an important milestone. Patients also need a practical path to receiving care.
We advocate with government agencies, insurers, and other organizations involved in treatment access to help reduce avoidable barriers and keep the needs of HD families at the center of decisions.
We work toward rigorous, timely FDA review and appropriate use of pathways that can bring safe and effective treatments to patients sooner. After approval, we advocate for timely Medicare and other insurance coverage decisions.
We also push for clear information about coverage, eligibility, and the steps required to access treatment, with fewer unnecessary administrative delays between approval, coverage, and care.
We want families’ experiences to be heard wherever decisions about treatment access are made.
Education: Understanding What Comes Next
Families deserve information they can understand and use. We aim to explain progress in HD treatment clearly, including what is known, what is uncertain, and what each development may mean for patients.
We explain new research, treatments in clinical trials, and where potential therapies stand in FDA review—including the difference between being studied, being reviewed, and being approved. As treatments receive approval, we will share information about eligibility, treatment delivery, and access.
We also help families prepare for care: what to ask their doctor, what information to request from their insurer, and what options to explore when barriers arise.
Our role is to help families prepare for informed conversations with their healthcare teams and insurers. Treatment decisions belong with patients and their qualified healthcare providers.
Hope: Somewhere to Turn
For many families, the day a treatment is approved will bring both relief and uncertainty. After years of waiting, the question may suddenly become: “What do we do now?”
We want to be there for the people asking that question—to listen, help them understand the next steps, and connect them with information and resources that may help.
Not every family has someone who can research treatment options, make calls, follow coverage decisions, or work through a complicated application. No one should feel that they have to figure everything out alone.
Hope means more than anticipating a treatment. It means having support as you work toward accessing it.
Building These Services Together
We are raising funds, developing partnerships, and preparing our programs now. As treatment options develop, we will share updates about our services, the application process, and ways to get involved.
Whether you are living with HD, supporting someone you love, or looking for a way to help, you are part of why we are building Take Back Tomorrow.
More Ways to Get Involved
Explore our Social Media Ambassador program, share your HD story, or learn about our commitment to transparent operations.