Some background information about me and how this bill came about
My name is Heather Ferguson and I have a three year old little boy
named Dylan who was born with primary lymphedema, which is the result
of missing or impaired lymph nodes and/or lymph vessels. Millions of
Americans suffer from lymphedema. The majority of these individuals
have lymphedema resulting from cancer or cancer treatment. This
secondary lymphedema occurs when lymph vessels are damaged or lymph
nodes are removed.
Like so many other lymphedema sufferers, I have had to fight our
insurance company for coverage of my son’s compression garments. In
2009 I worked with my State Representative, Tricia Cotham, and we
passed a mandate requiring all insurers in North Carolina to cover
lymphedema treatment beginning January 1, 2010. (You can read more
about how I achieved that at http://www.lymphnotes.com/story.php/id/475/.)
Virginia has also had a lymphedema mandate in effect since 2004.
However, state mandates do nothing for lymphedema sufferers in other
states, nor do they afford coverage to Medicare recipients in their
own states. Since this is a nation-wide problem a nation-wide solution
is needed. Therefore, late last year I sought out my Congressman,
Larry Kissell. After meeting with him and sharing my personal saga
along with a plethora of information from the National Lymphedema
Network, he soon decided to become the sponsor of The Lymphedema
Diagnosis and Treatment Cost Saving Act of 2010.
This act aims to amend current Medicare policy and ensure that all
American (with insurance - private or public) receive coverage for the
treatment of lymphedema. This act will actually reduce Medicare costs
while improving patient care and quality of life. Currently, Medicare
and some private insurance companies do not offer complete coverage
for this disease. These policies only cover the expensive, difficult
to treat and often chronic complications which are the inevitable
result of patients having not received the proper medical care in the
earlier stages. Such policies are falling short of providing these
individuals treatment in accordance with established standards of care
and lead to the expenditure of immense amounts of precious healthcare
resources to treat preventable lymphedema-related cellulitis.
As the mother of a child with lymphedema I cannot begin to express the
relief I would feel knowing my son could not be denied the treatment
coverage he needs to live an otherwise healthy and normal life. Before
embarking on the pursuit of state legislation, and now this federal
legislation, I spent countless frustrating hours appealing my
insurance company’s denials to no avail. I shudder to think at all the
time and energy my son will have to spend fighting for coverage over
his lifetime if this bill is not passed into law. Not to mention the
far worse possibility of having to go without treatment if our family,
or later himself as an adult, were unable to pay out of pocket.
If passed, this legislation will be life changing, and in some cases
even life saving, to lymphedema sufferers nation-wide, and will ensure
that no (insured) American is ever denied the lymphedema treatment
coverage they so desperately need and deserve.
Please feel free to contact me at hm...@earthlink.net.
Senior Moderator, Lymphedema People
Location: Colts Neck, NJ