Saturday, November 19, 2005

Lymphedema Stakeholders PAC

A new political action committee has been formed to represent lymphedama patients and to support legislative acitivities on our behalf at the Federal level. It is imperative that we as lymphedema patients be proactive on our own behalf and to push for comprehensive legislation at both the state and Federal levels that will insured our rights to treatment according to accepted protocols and that lymphedema be recognized as a chronic and serious medical condition.

I am a member of the PAC and totally support and encourage itts efforts.

From the homepage:

Who Are We?

Lymphedema Stakeholders Political Action Committee is a non-profit organization (501C4) formed to protect the rights of all lymphedema patients.

Our Mission

The mission of the Lymphedema Stakeholders PAC is to advance the quality of care for lymphedema patients, and to protect patients' rights to comprehensive lymphedema therapy from providers who meet standards established by the Lymphology Association of North America (LANA).

Visit their website at:

Lymphedema Stakeholders


One of the first tasks facing the Coalition was to fight to stop changes in the Medicare rules that would greatly limit our access to this treatment, called manual decongestive therapy.

This page will give background on these rulings and how they will affect us.

Limits to Manual Lymph Drainage in the Treatment of Lymphedema

The Coalition has also joined has with a much larger, broad based healthcare coalition devoted to preserve patient access to physical medicine and rehabilitation.

Read about this organization:

The Coalition to Preserve Patient Access to Physical Medicine and Rahabilitation

On November 16, 2005, the groups hed a press conference in Washington DC outlining our concerns and subsequently also met with numerous Federal legislators:

Press Conference

Again, I urge all lymphedema patients, therapists, healthcare providers, families and friends to support this venture.

Together we can make a difference.

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