News
Action alert: Alpha-1 Foundation, Association support health care reform, suggest action to protect Alpha-1 care and therapies
The Alpha-1 Foundation and Alpha-1 Association issued a joint press release today supporting health care reform legislation to make health care more affordable and insure proper quality of care for all Americans.
However, the organizations suggested the members of the Alpha-1 community take action to contact their Congressional representatives to make sure that access to care and specialized therapies be protected under health care reform.
“Access to specialized care and therapies for people with rare health conditions such as Alpha-1 Antitrypsin Deficiency must be addressed,” the joint release said.
“As Congress returns to home districts for recess, we have a great opportunity to meet, call or email our legislators and explain our needs in health care reform.”
Specifically, the release suggested the following principles for reform:
- Out-of-pocket costs and co-pays for those with rare diseases are too high and continue to block access to medical care.
- Deductibles and co-payments must be limited; they can deter patients from getting the care they need.
- Current proposals do not address how people with rare diseases will have unobstructed access to specialists.
- People with rare diseases must have access to the full range of medically necessary treatments appropriate for their condition. Alpha-1 therapies are not “one size fits all.”
- The Association and Foundation support comparative effectiveness research that identifies treatments and services that are effective in clinically treating rare diseases. However, comparative effectiveness must not become the means for prescribing through the creation of formularies and other restrictions on therapeutic use.
The real truth about health care reform
