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[Extensions of Remarks]
[Page E824]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
IN HONOR OF THE IMMUNE DEFICIENCY FOUNDATION
______
HON. KEVIN BRADY
of texas
in the house of representatives
Monday, June 24, 2019
Mr. BRADY. Madam Speaker, I rise today to recognize the Immune
Deficiency Foundation on the occasion of their biennial national
conference. On the weekend of June 20-22 more than 1,300 people
gathered at National Harbor, Maryland. As part of this conference, over
200 individuals impacted by primary immunodeficiency (PI) met with
legislators here on Capitol Hill to talk about important federal public
policy issues.
The Immune Deficiency Foundation (IDF), which is based in Towson,
Maryland, was founded by Marcia Boyle in 1980 after her son, John,
nearly died as an infant from a form of Pl. Roughly 40 years later,
John now serves as President & CEO of the Foundation as it moves into
its fifth decade. IDF advocates for persons and families impacted by
PI, which are a spectrum of more than 350 rare genetic disorders in
which a person's immune system functions improperly or, in the most
severe forms, is missing completely. Persons with PI face higher risk
of infection, and even a relatively mild cold can cause severe
complications. Some people go years or decades suffering from recurring
illnesses before being properly diagnosed, though thankfully today the
most dangerous form of PI--Severe Combined Immunodeficiency or SCID--
can be diagnosed via newborn screening.
I have been fortunate to work with IDF throughout my tenure in
Congress. I was introduced to the organization by my constituent Carol
Ann Demaret, who is a longtime member of the IDF Board of Trustees.
Carol Ann is the mother of David Vetter, the Houston boy who was
affectionately known as the ``boy in the bubble.'' David battled with
SCID during the 1970s until his untimely death in 1984.
Today, thanks to advances in science and medicine, as well as in
public policy, people with SCID and other forms of PI can live
healthier and fuller lives if properly diagnosed and treated. As of
late last year, all 50 states are screening for SCID as part of their
newborn screening program. This means children like David Vetter who
are born with SCID will be diagnosed promptly after birth and be able
to undergo a bone marrow transplant or even gene therapy to restore the
immune system they lack. This is no small accomplishment--I know I
speak for the Eighth District of Texas when I say thank you to IDF for
their great work throughout the years.
For persons with less severe forms of PI, treatment involving
immunoglobulin or Ig replacement therapy is vitally important. Ig can
be administered intravenously (IVIG) or subcutaneously (SCIG),
providing patients and their clinicians with treatment options.
Over the years, I have championed legislative efforts to ensure
Medicare beneficiaries have access to immunoglobulin therapies in the
comfort of their home. This includes the ongoing Medicare IVIG bundled
payment demonstration that we are working to transition into a
permanent benefit over the coming years as Medicare rolls out a larger
home infusion services benefit.
IDF, a true leader of the PI community, continues to support these
important access issues as well as other policies to advance care for
persons with Pl. These priorities include reauthorizing the successful
Newborn Screening Saves Lives Act and supporting medical research and
public health programs focused on PI. It is particularly exciting that
a number of SCID gene therapy clinical trials are ongoing, and I am
most hopeful for and optimistic about continued progress in the field.
Madam Speaker, while I could not be in attendance, I am proud to
recognize the IDF 2019 National Conference and I look forward to
continuing to support the needs of the PI community, I thank them for
all they do and I look forward to working with IDF on many more issues
in the future.
____________________