Equity for our community: today and tomorrow

A petition demanding Down syndrome participation in clinical trials and subsequent access to new Alzheimer's therapies

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The Down syndrome community demands equal access to drug therapies that could change our lives.

I believe that people with Down syndrome deserve equal access to, and insurance coverage for, life-changing drugs.

In signing this petition, I add my name to the thousands of people who care about the health and well-being of people with Down syndrome.

Today, our fight is focused on urgent inequities around new Alzheimer’s disease therapies. In bringing attention to the issue of Down syndrome equity now, our community is paving the way for access to future breakthrough treatments for other diseases and conditions.

The entrenched policies we change today will improve healthcare infrastructure and make access to treatment more equitable for people with Down syndrome in the long term.

Learn more about Down syndrome-associated Alzheimer’s disease, and the latest drug discoveries that are driving the need for policy changes.

Sullivan family
A young man with Down syndrome and his family sitting on a couch at home

LuMind IDSC invites all who are concerned about this ongoing injustice to sign the petition via this form and add your name to the overdue demand for equity for the Down syndrome community. Thank you!

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Our Petition

— I am a person with Down syndrome
— I love someone with Down syndrome
— I care about the Down syndrome community…

and I believe that people with Down syndrome deserve equal access to and insurance coverage for life-changing drugs.

Masood Sohail Omar

Our community demands

  • From the pharmaceutical industry: Take immediate steps to launch key safety trials in the Down syndrome population.
  • From state, federal, and private insurers: Immediately adopt the proposed Down syndrome-focused prior authorization and equivalency criteria, and clear the procedural barriers that currently prevent doctors from prescribing new drugs to people with Down syndrome.
  • From the federal agencies responsible for regulatory oversight: Issue conclusive language to resolve any current ambiguity around eligibility for people with Down syndrome and Alzheimer’s disease to facilitate participation in safety trials and, if warranted, for future prescriptions of this class of Alzheimer’s drugs. In addition, make adaptations to ensure the proposed registry of users does not create additional barriers for our community to overcome.
Fill out my online form.

In submitting this form, I understand that I am sharing my contact information with LuMind IDSC, a 501(c)(3) nonprofit organization dedicated to accelerating Down syndrome research and supporting families with key resources.  LuMind IDSC will not share your information with external partners.