Health Care Reform Call to ACTION

Get Involved with Healthcare Reform Today!


Please take time to click this link and an already composed letter pops up for you to send your congress person.  This is literally life or death for my family and many other families out there.  It doesn’t even take 4 minutes and could save lives.

With healthcare reform on the horizon, we need to let Congress know that we won’t go back to a time when we could be denied health insurance because of a pre-existing condition. Let your Members of Congress know today that we won’t go back!

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Before the Affordable Care Act, our genetics disqualified us from purchasing individual health insurance policies. If we were lucky enough to have health insurance, often through employment or spouse, we would often max out our yearly and lifetime limits or be arbitrarily dropped by our plan. Families like mine were then forced to pay exorbitant out of pocket for necessary treatments, prescriptions, and care until we would finally be eligible for Medicare or Medicaid. We can’t go back to this system.

We all know that the current reforms are not perfect, but they have been literal lifesavers for families affected by Huntington’s disease. We have a lot of work to do together to improve access and affordability in our healthcare system – especially for those with rare diseases like HD – but we beg you not to make us go back to the way it was before.

As you work to improve our healthcare system, please remember that healthcare reform is more than just a bill that you will vote on in Washington, D.C. It is my family’s ability to see a doctor, fill a prescription, and – quite literally – survive. We need you to remember us as you craft the replacement plan that, at a minimum, must:

– retain the prohibition on yearly and lifetime insurance caps;
– ensure that individuals with pre-existing conditions can’t be denied affordable health insurance; and
– maintain the expansion of Medicaid so that families affected by HD have a strong safety net if we need it.