Kaiser News Reports:
After Russ Hillard developed Huntington’s disease, a devastating neurological disorder, he lost his $35,000-a-year job as a welder and, with it, his health insurance.
His wife, who was working part time, had insurance, but it didn’t come close to covering the medical bills for the incurable disease, which causes uncontrolled movements, emotional problems and the loss of cognitive abilities. Eventually, Hillard qualified for Medicare, which covers disabled people under 65 after a two-year waiting period. But the coverage didn’t kick in until after the family went deeply into debt and had to take out a $20,000 loan on their home in Methuen, N.H. …
Under federal rules, most people with disabilities who are younger than 65 aren’t eligible for Medicare until more than two years after they qualify for Social Security disability income. A coalition of more than 65 organizations led by the Medicare Rights Center has been pushing Congress to do away with the waiting period. But the effort has stalled because of the high cost to the federal government – an estimated $113 billion over 10 years …
Some groups, including the Huntington’s Disease Society of America, are going their own way, asking Congress for specific waivers from the Medicare waiting period for their diseases.