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Contact: Carol Blymire, 301.332.8090
ON ONE-YEAR ANNIVERSARY OF SENATE INACTION ON H.R. 810,
CAMR GIVES PATIENTS A VOICE ON CAPITOL HILL
- Derick Lindsey, Jackie Christensen, Lisa Clare and Michelle Mundt share “a year in the life” waiting for better treatments and cures through embryonic stem cell research -
WASHINGTON, D.C., May 24, 2006 – To commemorate the one-year anniversary of House passage of the Stem Cell Research Enhancement Act (H.R. 810), the Coalition for the Advancement of Medical Research (CAMR) hosted an event on Capitol Hill today to give patients and their families an opportunity to talk about their experiences over the past year – a year during which the Senate did not act on H.R. 810, despite promises from Senate Majority Leader Frist that the legislation would see swift action in the Senate.
“According to recent research, nearly three-quarters of Americans support stem cell research and want the Senate to vote on the Stem Cell Research Enhancement Act,” said CAMR president Sean Tipton. “It has been a year since the U.S. House of Representatives showed strong bipartisan support in passing H.R. 810 and it’s time for Senate Majority Leader Frist to schedule this for a Senate vote now.”
At today’s event in Russell Park on Capitol Hill, Washington, D.C., mother Michelle Mundt said, “Last year, I had two important reasons to support the passage of the Stem Cell Research Enhancement Act -- my husband Tim and my 3-year old son Duncan, who both have Type I diabetes. This year, I have a third reason -- my 5-year old daughter Caitlin was diagnosed with Type I diabetes. Unfortunately, diabetes hasn't taken a year off while we waited for the Senate to act. Every year we delay in finding a cure for diabetes, our family will endure another 3,000 insulin injections and another 7,000 finger sticks. We can't afford to wait any longer. The Senate needs to act now to fulfill the promise that stem cell research holds for my family and millions of other families like ours.”
Reading from a college application essay, Derick Lindsey said about his experience with Stage 4 non-Hodgkin’s lymphoma, “I became sick nearly all the time. I was sleeping all the time, puking and running high fever. A simple-minded person would have thought that nothing good could come from this. Shortly after starting chemo, my hair began to fall out very rapidly, and I had thoughts like, ‘no one will want to be friends with a bald kid,’ and ‘no one will want to go to prom with a bald kid.’ I had missed so much of my life being in a hospital, and once again, I had to continue my life going to the hospital every week and barely having time for school or friends for a year.”
Minneapolis resident Jackie Christensen suffers from Parkinson’s Disease. After having risky Deep Brain Stimulation surgery to try to keep her Parkinson’s symptoms at bay, she said that the surgery “will mask my symptoms for an unknown period of time, improving my quality of life, but it does nothing to slow the progression of the disease. It has not been so beneficial to our finances: the expenses associated have already cost us about $8,000. We are extremely blessed to have good insurance, because there is no way we'd have been able to pay the $137,000 bill. Many others with Parkinson’s are not so lucky. They may be ineligible for the surgery because of other health issues, or simply unable to afford it. If my disease can progress so much in a year and I can take the steps I must for the sake of my life and my family, then why can’t Senator Frist take the action he promised almost a year ago and allow this bill to come to a vote?”
Lisa Clare, from Leesburg, VA spoke at the event about her daughter MacKenzie, a Girl Scout who was paralyzed in a car accident in 2005, “When my husband and I heard that our 10-year old daughter would never walk again we nearly fainted. However, we were blessed with hope. One of MacKenzie's doctors told us to get her exercising immediately… that we needed to keep her body healthy because embryonic stem cell research showed potential to repair the spinal cord. We have no doubt that someday MacKenzie will walk down the aisle with her Daddy on her wedding day, have children of her own, and be the veterinarian that she wants to be! Please Vote ‘yes’ on the Stem Cell Research Enhancement Act with no amendments and no alternatives. We consider this the only pro-research vote there is!”
Boston-area resident Chaz Southard was paralyzed from a neck fracture he sustained in August 2002. Unable to come to the event due to current health problems, Chaz, a quadriplegic, wrote in an email to CAMR president Sean Tipton, “This past year has been hell for me and for my family. Not many people know that a very common complication to paralysis is vulnerability to infection. The bacteria that have invaded my body this past year have limited medical options for treatment. Any cut or burn on my body can become life threatening within eight hours. I have been on intravenous antibiotics three times in the past year and on another antibiotic that costs $1,200 for a ten-day cycle of medication. Every day is full of pain and anxiety. My family has dedicated themselves to keeping me alive until there is a cure. Every night I go to bed praying that our leaders will one day stand behind the people who cannot stand for themselves. I ask you today to please vote into law the Stem Cell Research Enhancement Act as it is written so that I and millions of others who suffer from the scourge of paralysis may look to the future with hope.”
“As it does with other kinds of promising technological and medical research, CAMR believes the federal government must fund human embryonic stem cell research,” Tipton added. “CAMR calls on the Senate to vote for H.R. 810 with no amendments and no alternatives. We believe this bill will pass, but if it is not scheduled for a vote, we not only risk the lives and well-being of millions of Americans and their families, we also risk losing America’s leadership position in the fields of science and medicine.”
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