MDA's Voice for Change

Palliative care for kids, transition services for young adults, and genetic discrimination are just some of the projects being worked on by MDA’s Advocacy program, under the energetic direction of MDA Vice President Annie Kennedy.

Following are some highlights of these projects.

Palliative care in pediatrics

Teams from six MDA-affiliated clinics across the United States recently were selected to participate in the U.S. component of the Heartsongs Project, a new international pediatric palliative care program. They join teams from five other countries: Australia, Canada, England, France and Greece.

MDA, project leader for the U.S.delegation, hosted a meeting in January in Baltimore to kick off the initiative that looks to focus on optimizing care for children with type 1 spinal muscular atrophy (SMA1) and Duchenne muscular dystrophy (DMD). Plans include eventual expansion of the program to include other pediatric diseases in MDA's program.

Although traditionally associated with hospice or end-of-life care, Kennedy notes the term palliative care takes on new meaning when applied to young people with neuromuscular diseases.

Annie Kennedy directs MDA’s Advocacy program in behalf of people with muscle diseases. To find out how you can become part of that effort, visit the Advocacy page.

"It's not just end-of-life care," she explains, because the ability to predict when that time will occur often is impossible. Instead, for children with neuromuscular diseases, Kennedy says, "Palliative care begins when a child receives a diagnosis and continues throughout that child's life regardless of any treatment received."

Watch for more on this new project in the Summer 2009 issue of Quest.

Transitional services help kids become adults

MDA's new transitional services program aims to help children with pediatric neuromuscular diseases prepare for adulthood in a system that often isn't prepared to care for their psychosocial, financial, legal, and special healthcare needs.

The program assesses the various needs and concerns of the young adult community and identifies opportunities for support and services to promote maximum independence and ease the transition to adult-centered care.

MDA's Transitional Services Task Force has developed the Roadmap to Independence, a tool aimed at preparing youngsters and families ahead of time to navigate the transition process. The Roadmap soon will be available through all MDA clinics and local offices.

Look for more about the new transitional services program in the MDA Advocacy Report in the Spring 2009 issue of Quest.

GINA not in effect yet

Kennedy notes that, although the Genetic Information Non-Discrimination Act, or GINA, was signed into law May 21, 2008, its protections aren’t scheduled to go into effect until later this year.

This civil rights legislation, strongly supported by MDA’s Advocacy program, protects persons with known genetic disorders from discrimination by employers and medical insurance companies. Among other provisions, GINA limits the genetic information insurance companies are permitted to access and maintain on file, and prohibits such companies from charging higher premiums based on known genetic risks.

Provisions in GINA that apply to health insurance take effect May 21, 2009; those that reference workplace issues go into effect Nov. 21, 2009. Currently, any protections from genetic discrimination are those conferred by individual state laws, says Kennedy.

For complete information on GINA, see: Genetic Information Nondiscrimination Act of 2008.

For more information issues that affect people with neuromuscular diseases, or to register to join MDA's advocacy community, visit MDA’s Advocacy pages.

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