[Congressional Record Volume 165, Number 106 (Monday, June 24, 2019)]
[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.

                          ____________________