Patients Speak Out on Capitol Hill

Published: June 22, 2004  |  Source: usnewswire.com
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WASHINGTON, June 23 /U.S. Newswire/ — Today, patients gathered for a press conference on Capitol Hill to echo the Congressional calls on President Bush to revise the current stem cell research policy. 142 patient groups, universities and scientific societies sent a letter today to the White House urging the President to expand the policy, which severely curtails embryonic stem cell research and hinders potential treatments and cures. The letter was initiated by the Coalition for the Advancement of Medical Research (CAMR), the group which led the charge to support U.S. federal funding of embryonic stem cell research.

“While the Administration’s policy was met with great hope, recent developments in the research demand an expansion,” said Daniel Perry, president of CAMR. “In the past three years since the policy was announced, more than 4 million Americans have died from diseases that embryonic stem cell research has the potential to help. We just can’t afford to wait any longer,” he added.

In the letter to President Bush CAMR members noted that embryonic stem cells stand as a crucial link to the scientific puzzle that may mitigate the pain and suffering of more than 100 million Americans and provide new therapies for countless diseases such as diabetes, Alzheimer’s, Parkinson’s, ALS, heart disease, spinal cord injury and cancer. When the policy was announced on August 9, 2001, the Administration believed more than 60 embryonic stem cell lines were available for research. Today, estimates from the National Institutes of Health (NIH) show the number of available lines at only 19, well short of what the policy intended. A full text of the letter is available at:

At the press conference, patients and caregivers affected by Rett Syndrome, diabetes, spinal cord injuries, Parkinson’s and infertility voiced their support for unleashing the full potential of embryonic stem cell research. “There are no treatments and no cure for my daughter,” said Daphne Thomas, mother of Alyssa who was diagnosed with Rett Syndrome at age 4. “As an ER doctor I perform life-saving procedures daily, but I can do nothing to help save my own daughter’s life from this cruel disease,” she stressed.

Representatives Michael Castle (R-Del.) and Diana DeGette (D- Colo.), leaders of the bipartisan House letter to President Bush, also unveiled new stem cell legislation which would direct the Secretary of Health and Human Services to fund research on stem cells derived from excess embryos created for fertility treatment purposes.

The Coalition for the Advancement of Medical Research (CAMR), is comprised of nationally-recognized patient organizations, universities, scientific societies, foundations, and individuals with life-threatening illnesses and disorders, advocating for the advancement of breakthrough research and technologies in regenerative medicine — including stem cell research and somatic cell nuclear transfer — in order to cure disease and alleviate suffering.