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Government Affairs Position Statements
Pediatric Stem Cell Therapy
Stem cell therapy utilizing bone marrow, peripheral blood, cord blood and placental blood can provide cures for traditional disorders such as cancer, bone diseases and immune disorders that were previously thought to be lethal. While DDC actively supports public consciousness of the benefits that this research provides for these well-known diseases, current initiatives to increase awareness of the beneficial impact that regenerative therapy in pediatrics produces upon lesser-known diseases remain insufficient. Our research has shown that various ailments such as cardiac disease, diabetes, neurodegenerative diseases and other ailments could potentially be eradicated through stem cell transplants. While public perception of stem cell therapy for adults grows every day, especially given the Obama Administration's recent efforts to expand stem cell research, advocacy for these salubrious therapies for children remains a priority.
Pediatric Cancer
DDC endorses any legislation designed to support children diagnosed with cancer, their families, doctors and caregivers who are instrumental in the children’s treatment. Sadly, more than 12,500 children will be diagnosed with cancer this year and more than 2,300 children will succumb to the disease. The emotional toll childhood cancer inflicts is not limited to the child; the many family and friends who help them throughout treatment are also affected by the disease. DDC congratulates the passage of H.R. 1553, “The Conquer Childhood Cancer Act” which was signed into law on 7/29/2008. This legislation authorizes $150 million over five years to develop grants for research fellowships in pediatric cancer for clinical and translational investigators, to fund a population-based national childhood cancer database, and to award grants to childhood cancer organizations to raise public awareness, ensuring access to the best available therapies for pediatric cancers.
NIH Funding
DDC supports increased funding of the National Institutes of Health (NIH) and the National Cancer Institute (NCI). The NIH is instrumental in researching and curing many life-threatening diseases, including cancer. DDC applauds Congress for passing the “American Recovery and Reinvestment Act of 2009” which includes $10 billion in health research and construction of NIH facilities. Additionally, the “Omnibus Appropriations Act of 2009” provides the NIH with a total of $30.3 billion for federal year 2009, $937.5 million more than fiscal year 2008. The funding represents an increase of approximately 3.2 percent and will allow the NIH to allocate funding for new research grants.
Medicaid / Healthcare
In addition to the enormous emotional burden these diseases put on the children and their families, the ever-rising healthcare costs the families are responsible for add to an already incredibly stressful situation. DDC strongly supports initiatives limiting healthcare restrictions, enabling patients to receive these cutting edge therapies in a timely manner. Furthermore, DDC applauds the recent $86.6 billion in additional Medicaid funding included in the Stimulus package. A family should never be denied the opportunity to save their child’s life due to their inability to pay for the necessary treatment.
Clinical Trials
Clinical trials are instrumental in determining if newer treatments are more effective than previous ones. However, funding, patient enrollment and insurance problems can prevent potentially life saving-therapies from ever being tested. DDC thanks Rep’s Sherrod Brown and Steve Israel for introducing S. 488 or H.R. 716, which would prevent healthcare plans from denying patients enrolled in clinical trials that would have been covered under their plan had they participated in what is considered standard therapy. This would remove a major barrier toward patient enrollment in clinical trials.
Useful Advocacy Links
For more information, please contact Brad Tallamy at 212-305-3268 or at bwt9001@nyp.org
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