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House Panel High on Bills Addressing Infant Death, Transplant Drugs

WASHINGTON — The House Energy & Commerce Health Subcommittee hearing on Wednesday sounded a lot like an Obama campaign rally, with “Yes we can” as the overarching theme.

“It’s safe to say that this is a bill that will [make it] through the subcommittee and full committee process and hopefully to our colleagues in the Senate,” member Michael Doyle (D-Pa.) said of one of the bills under discussion.

“This bill’s going to move; it has to,” subcommittee chairman Anna Eshoo (D-Calif.) said of another bill. “It will make all the difference in the world not only for patients but also for the dollars attached to it, it’s common sense.”

“We will fix it,” ranking member Michael Burgess, MD (R-Texas), said of a provision in a third bill that a fellow Republican was complaining about.

Rep. Michael Burgess, MD (R-Texas) (Photo courtesy House Energy & Commerce Committee livestream)

The subcommittee was discussing a smorgasbord of seven different health bills, with topics ranging from paying for immunosuppressive drugs for kidney transplant patients to encouraging more research into the causes of sudden unexpected infant death (SUID) and unexpected deaths of children.

Subcommittee members were visibly moved during testimony on the latter bill, known as the “Scarlett’s Sunshine on Sudden Unexpected Death Act,” by Stephanie Zarecky, whose daughter Scarlett died in her sleep of unknown causes at 16 months. “We read the parenting books and followed all safe sleep guidelines … yet we still lost our healthy, thriving, precious baby girl,” Zarecky said. “It is an unimaginable tragedy no parent should have to live with, and there are thousands of us who do it every day.” (CDC statistics put the annual total at about 3,600 per year.)

The bill would require CDC to revise the Sudden Unexplained Infant Death Investigation Reporting Form to include doll re-enactments and scene investigation information on sleep-related deaths of children under the age of 5; it also would authorize CDC to make grants toward improving completion of death scene investigations for sudden unexplained deaths of children and infants. The bill also authorizes grants through the Health Services and Resources Administration to develop and deploy support services for families who have had a child die of unexplained causes, something that Zarecky said was desperately needed.

“Having someone who could make a phone call to the medical examiner’s office … I can’t tell you how impossible even dialing that phone number is at times … Having that support not only from an emotional standpoint but logistical are things you don’t think of when you’ve lost a child,” she said. Also, “bereavement support for families is critical … I don’t know where I’d be today if I didn’t have the support of other families who’ve walked this journey before me.”

Rep. Joe Kennedy (D-Mass.) said he had a constituent who wrote about how he had lost his child under similar circumstances; he later met with the man in person. “[It was hard] listening to that young dad try to make sense out of what happened, to wrestle with the stigma associated with the loss of a child and the judgment that came down on him and his wife for the perception of having done something wrong and not being able to point to anything,” he said. “It highlights the obvious need to do everything we can to make sure this doesn’t happen again … and that families get answers.”

Members on both sides of the aisle also were sympathetic to H.R. 2468, the School-Based Allergies and Asthma Management Program Act. That bill would give grant preference to states requiring the presence of a school nurse during school operating hours; a school-based allergies and asthma program, including a way of identifying students with allergies and asthma; and an individual action plan for each one of those students.

Rep. H. Morgan Griffith (R-Va.) supported the bill. “When I was 5 years I got in trouble because I threw a cookie across the room” after a teaching aide tried several times to give it to him. “I had a wheat allergy and I knew I couldn’t eat that cookie.”

Kenneth Mendez, president and CEO of the Asthma and Allergy Foundation of America, who testified in favor of the bill, noted that “Food allergy bullying happens in classrooms that we really ought to be aware of,” and also spoke in favor of increasing diversity in clinical trials for allergy and asthma treatments.

There was similar enthusiasm for H.R. 5534, the Comprehensive Immunosuppressive Drug Coverage for Kidney Transplant Patients Act. Currently, for patients with end-stage renal disease who are covered by Medicare, the government pays for the transplants but only provides coverage for immunosuppressive drugs that prevent rejection for 36 months, even though such treatment normally extends far longer. This bill would remove that 36-month limit. Transplant patients who go off their immunosuppressive drugs — which typically cost around $2,000 annually — because they can’t afford them once the coverage runs out often lose the graft and have to resume dialysis and then join the transplant wait list a second time.

Loss of a kidney graft “is a bad deal when it happens to someone,” Burgess said. “They were on the waiting list, waited a long time, and got a match … [These drugs are] not a big expense [for Medicare]; this is relatively manageable and yet but for that small investment, these patients go into something from which they cannot recover without another surgery.”

“Across the country, well over 70% of programs can talk about at least one patient who lost their organ due to insufficient coverage,” testified Matthew Cooper, MD, director of kidney and pancreas transplantation at MedStar Georgetown Transplant Institute here. “It costs about $86,000 a year for dialysis,” while a kidney transplant, after the initial upfront $100,000 cost, requires only about $2,000 a year for immunosuppressive drugs. “This legislation can potentially save kidneys, save lives, and potentially save Medicare money. Let’s bring this across the finish line; it’s time to put an exclamation point on this.”


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