Healthcare and
issues facing the
rare disease
community have
been at the
forefront of
national
conversations
over the past 6
months. As an
organization, we
joined the
National
Organization of
Rare Diseases
(NORD) and the
American Academy of Pediatrics in opposing the
proposed House and Senate health care replacement
bills. The position of both of these organizations is that
these bills, if enacted, would be detrimental to those
with MSUD and other rare diseases as they proposed
to cut hundreds of billions of dollars from Medicaid,
roll back key pre-existing conditions protections, and
cause a rapid loss of insurance access. At the time of
this article, efforts to repeal the Affordable Care Act
have not been successful, but bipartisan efforts are
needed to ensure adequate support to strengthen it.
At the time of this writing it is unclear whether the
current administration will continue subsidies which
help insurers cover the costs of lower income
Americans who cannot afford deductibles and copays.
Another concern is that the administration is reducing
efforts to promote enrollment. It is vital that you
contact your Representatives and Senators to advise
them of your position on health care legislation.
We urge our membership to call their Members of
Congress to ask for their support of the following
legislations:
The Medical Nutrition Equity Act of 2017 was
introduced to the U.S. Senate by Senators Grassley
(R-Iowa) and Casey (D-Pennsylvania). This bill
requires coverage for medically-necessary foods
through Medicaid, Medicare, the Federal Employee
Health Benefit Program, and private insurance.
The Orphan Product Extension Now, Accelerating
Cures and Treatments (OPEN ACT) could bring
hundreds of safe, effective, and affordable
medicines to rare disease patients within the
next several years by incentivizing drug makers
to repurpose therapies for the treatment of lifethreatening
rare diseases. EveryLife Foundation,
NORD, Global Genes, and Genetic Alliance are
among the more than 220 patient organizations
supporting this bipartisan legislation.
In addition to asking for the support of the above
legislations, we also urge our U.S. membership to ask
their Members of Congress to join the Rare Disease
Congressional Caucus.The Caucus is a forum for
Members of Congress to voice constituent concerns,
collaborate on ideas, facilitate conversations between
the medical and patient community and build support
for legislation that will improve the lives of people
with rare diseases. If your Members of Congress have
already joined the Caucus, we encourage you to thank
them!
Subscribe to the MSUD Family Support Group
Mailing list (http://msud-support.org/ home page)
for advocacy alert email blasts. We also encourage
you to subscribe and follow NORD, Global Genes, and
Rare Disease Legislative Advocates (RDLA) to keep up
with the advocacy issues that face the rare disease
communities.
Lastly, we want to give big congratulations to the
participants of the Global Genes Denim Dash MSUD
Road Warriors team. The team ran/walked 5ks
throughout the month of April to raise money for both
Global Genes and the MSUD Family SUpport Group.
The team raised over $10,000 for the Denim Dash as
a whole with $5,314.56 being donated directly to the
MSUD Family Support Group. Special thank you to:
Ashley Bricker, Dana Chambers, Jordann Coleman,
Tracy Clouser, Karen Dolins, Michelle Flanagan, Susan
Mays, Chassidy Turner-Williams, and Sarah Wagner. You
are all rock stars!
The MSUD Family Support Group is currently funding several research projects and we are proactively looking for researchers interested in developing new treatments or finding a cure for MSUD. Significant funding is necessary if we are to accomplish this goal.
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