Cure SMA Grassroots Alert – AHCA

After a failed attempt in March, Members of Congress are trying once again to assemble legislation to repeal key parts of the Patient Protection and Affordable Care Act (ACA). The latest attempt, called the American Health Care Act (AHCA), could impact SMA patients’ access to health care services by allowing states to opt out of certain patient protections. It is important that any health care bill ensure patients with pre-existing conditions continue to receive coverage and retain the ability to purchase healthcare at reasonable premium rates.

The AHCA would also impose significant cuts to Medicaid that could result in less access to health care coverage and services for low-income beneficiaries and people with disabilities.

To impact the legislative process it is important that Members of Congress hear from affected individuals and families. You can make your voice heard by contacting your Member of Congress and urging them to take into consideration families and individuals with SMA when they vote on the American Health Care Act.

  1. Find your Representative online and contact his or her office. 
  2. Using the talking points below, you can deliver your message. 
  3. You can also reach out to your Member through Twitter. Either ask the office for the Member’s Twitter handle or find it using the Twitter search function.

Not sure what to say? Here are suggested talking points for your Member of Congress:

My name is ___________ and I live in town/city/state.

  • I/My child/family member [NAME] have/has spinal muscular atrophy (SMA). This is a neurological disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. 
  • I am calling to ask that Representative LAST NAME consider the needs of families like ours when debating the American Health Care Act. 
  • The AHCA could harm SMA patients’ access to care and treatment by allowing states to opt out of patient protections that ensure affordable access to health insurance for people with SMA. 
  • The AHCA also removes requirements that insurers cover certain services and prescription drugs, which will make it extremely difficult for people with SMA to receive the care and treatment they need and deserve. 
  • There are 11,000 people living various types of SMA who require ongoing treatment and care for this debilitating disease. Do not disadvantage our community by enacting the provisions of the American Health Care Act. 
  • Please remember families and children with SMA when debating the American Health Care Act – you may be saving a life!

Tweet Your Concerns with the American Health Care Act:

  • @Representative Protect SMA patients’ access to care and treatment #AHCA! #ACAprotections #protectourcare 
  • @Representative I/my son/daughter have/has SMA, please #protectourcare #AHCA!

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