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CLICK HERE to read the statement.

SCID is a group of genetic disorders that causes profound defects of the immune system, the body’s line of defense against all types of infections. SCID is one of the most critical immune system problems and occurs in an estimated one in 40,000 to one in 100,000 newborns. If it is not treated, most affected infants die within the first year of life.

“I’m very happy that Texas will begin screening for SCID,” said DSHS Commissioner Dr. David Lakey. “While SCID is an extremely serious condition, it can be treated successfully if it is detected early. Adding this screening will help give Texas babies with SCID the opportunity to live normal, healthy lives.”

Texas operates the largest newborn screening program in the nation, testing about 800,000 specimens per year. The blood to be tested is drawn by a simple heel stick within 48 hours of birth and again at one to two weeks of age. The screening provides an opportunity to detect medical conditions that, if not addressed early, would cause serious problems like developmental delays, major illness or death.

(News Media Contact: Chris Van Deusen, DSHS Assistant Press Officer, 512-776-7753)

Not quite.

Their donors don’t give blood, they just give the plasma and get to keep their red blood cells. They can donate up to 2 times a week.

The firm then processes the plasma into medicines used to treat immune and genetic deficiencies. Julie Fetch of Constantine says April is Primary Immune deficiency Awareness month, it’s a rare disease and often isn’t diagnosed and treated properly.

She says without the blood products manufactured from the Plasma, she would probably die from uncontrolled infections. She toured the facility yesterday with Congressman Fred Upton, who says he will use what he learned in creating healthcare policy.

Giving plasma takes about 90-minutes and they pay people for their time. .

The facility accepts plasma donations for the purpose of saving lives.

The Congressman learned the ins and outs of plasma donations, and also met a woman who is alive today because of a donor.

The woman was diagnosed with Autoimmune Deficiency Disorder, but a plasma donor helped save her life.

The Congressman says donors are doing something very important for those in need.

The facility is located on East Kalamazoo Avenue.

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CLICK HERE to read the Dear Healthcare Professional letter.

Larry LaMotte
Phone: 443-632-2552
Cell: 410-458-8336
E-mail: llamotte@primaryimmune.org

(WASHINGTON, D.C., March 29, 2012) – Volunteers for the Immune Deficiency Foundation (IDF) flocked to Capitol Hill on Thursday, March 22 to advocate for the Medicare IVIG Access Act, H.R. 1845/S. 960 as part of the IDF 2012 Advocacy Day.

Forty-seven patients and family members living with primary immunodeficiency diseases from 30 states across the country participated. The advocates met with their Senators and Representatives, holding a total of 91 meetings with Congressional offices, to urge sponsorship and support for the legislation. Champions of the Medicare IVIG Access Act, Congressman Kevin Brady and Congressman Chris Van Hollen accepted the IDF Distinguished Public Policy Award and spoke to the group about the importance of this legislation.

Introduced by Representatives Kevin Brady (R-TX) and Doris Matsui (D-CA) and Senators John Kerry (D-MA) and Lamar Alexander (R-TN) and with strong bipartisan support, the bills provide for a study of issues relating to access to intravenous immunoglobulin (IVIG) for Medicare beneficiaries in all care settings and a demonstration project to examine the benefits of providing coverage and payment for items and services necessary to administer IVIG in the home for patients with primary immunodeficiency diseases (PIDD). Because of medical advances like IVIG, many individuals affected by PIDD—which are disorders in which part of the body’s immune system is missing or does not function properly caused by intrinsic or genetic defects—can live healthy, productive lives. Without treatment, everyday illnesses like the common cold can put them at risk for infection and more serious complications. Current law pays for the IVIG product but prohibits Medicare from reimbursing for the nursing services and equipment necessary to infuse a patient in the home setting.

“We feel very strongly that this legislation is essential to ensure the ability of patients to access their lifesaving treatments in the most appropriate site of care,” said Marcia Boyle, IDF President and Founder. “The positive responses we heard in our meetings and the enthusiasm of our Congressional champions encourages me that this is the year we will be successful in achieving this goal.”
Although current Medicare law provides a home infusion benefit specific to patients with a primary immunodeficiency diagnosis, coverage for the related “items and services” are excluded. As a result, a 2007 Assistant Secretary for Planning and Evaluation (ASPE) report found that home infusion providers generally do not take new patients with only Medicare coverage – leaving Medicare patients with prohibitive out-of-pocket costs or no access to home infusion. The Medicare IVIG Access Act seeks to address the absence of coverage for the required items and services for IVIG home infusion for patients with PIDD.

About the Immune Deficiency Foundation
The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. For more information, contact IDF at 800-296-4433 or www.primaryimmune.org.

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