Forum, Fall 2013
The Cutaneous Lymphoma Foundation joined members from the
Coalition of Skin Diseases and physicians from the American
Academy of Dermatology (AAD) in September for the AAD’s
2013 Legislative Conference. The 2-day conference included an
update on hot topic issues and a day of meetings with legislators
on Capitol Hill. The message was similar to that of One Voice
Against Cancer’s on the impact of the sequester on research
funding, but also highlighted the importance of the FDA’s
proposed order to reclassify sunlamps and provide much-needed
oversight of indoor tanning, which greatly increases the risk of
developing skin cancer.
The summer meeting for the Regulatory Education and Action
for Patients (REAP) consortium focused on the Health Insurance
Marketplaces, Market Reforms, Multi-State Plans, Imminent
Affordability Provisions of the Affordable Care Act, Patient
Centered Outcomes Research Institute and Patient Engagement,
and information about the FDA Patient Network.
In addition, the group reviewed the letter submitted to the
Centers for Medicare & Medicaid Services (CMS) regarding
concerns about the outline for essential health benefits. The
letter was recognized by Larry Cohen, the agency head, for
the valuable input. He acknowledged REAP for bringing the
patient’s voice to the attention of regulatory and legislative
By collaborating as a group, REAP has made a difference in policy and regulations that affect patients and will continue
to bring to light issues that are of concern going forward. The CLF actively participates in workgroups like the one that
crafted the letter to CMS.
To learn more about CLF’s advocacy initiatives or how you can become involved, visit
CLF’s Susan Thornton with Dirk Elston, MD, president of
American Academy of Dermatology at the AAD’s 2013
Where can I get more information?
Interested in a little LIGHT reading? You can read the
ENTIRE affordable care act law, as well as get other
information about the programs included in the ACA at
For a great infographic explaining the potential Medicaid
The ACA also mandates the streamlining and simplification
of ALL applications for medical insurance coverage. Here
is a link to the proposed short form application for health
insurance through the exchange program,
To explore the Healthcare Marketplace and your options to
purchase insurance, go to Healthcare.gov.
The Affordable Care Act...
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she has managed to keep a positive attitude, to be strong
in her faith and she continues to inspire others through
her story. “I’ve been
through so much. There
has to be a reason I
Everyone has a story.
Your story may be
different from Donna’s
but everyone has a
story that by simply
sharing can inspire
To learn more about
Donna’s story and
to order copies of
her book His Mercy
Edureth visit http://
My Personal Journey..
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