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Government Reform and Oversight Committee February 12, 1998 Mr. Chairman: Thank you for holding this hearing today on patient access to alternative medical treatments. This is an important issue, and I hope that this hearing will help focus attention on the need to reexamine our policies with regard to alternative medical treatments. Like many of the people who are involved with this issue, I support access to alternative medical treatments. My views on this have been supported by the experience that my wife and I have had with our daughter Dorothy, who suffered from medulloblastoma, a very aggressive form of brain cancer. When she was first diagnosed, she was 3 years old and was given a 20 percent chance of surviving until her 5th birthday. Dorothy's 20 percent chance of survival was contingent upon undergoing all available conventional treatments, including chemotherapy and radiation. Like all parents who face this unbelievable, horrific news, my wife and I spent every moment that we could learning about the effects of chemotherapy and radiation. We examined what other treatments we might be able to pursue for Dorothy that could help her beat the terrible odds she was facing. My wife, after literally hundreds of hours of research and assistance from medical professionals, developed a vitamin and nutritional supplement program for Dorothy that not only helped her withstand chemotherapy, but also bought us some time to strengthen Dorothy and wait until she was a little older before undergoing radiation treatments, which can have very detrimental impacts on young children. Dorothy is now 6 years old. She is cancer-free and has been for many months now. I can't say for sure what part of Dorothy's treatment worked and helped her beat those initial odds. I don't think she would be alive today without radiation and chemotherapy, and I strongly believe that no patient should ever forego conventional treatment. But, I do think that the vitamin and nutritional supplement program helped Dorothy, and I think every parent of a child facing a serious illness should be able to make the kinds of choices we made about pursuing alternative and complimentary therapies. I don't know what the future holds. But I do know that we've gotten this far by being vigilant and aggressive health care consumers, by pursuing alternative therapies to help strengthen our daughter, improve her health, and help her endure the battle against cancer. I am here today, because I know that our story is not unique. I have heard from thousands of people across the country who face similar situations, but who are not fortunate enough to have access to physicians who can help them seek alternative treatments, or who live in states, like California, where it is illegal for a doctor to treat cancer with anything except chemotherapy, radiation or surgery. These people are desperate because they are fighting a terminal illness and conventional treatments are failing them, and so is the medical establishment. State governments that restrict access to treatment fail their citizens. The federal government also fails to help these individuals by refusing to allow those facing life-threatening illnesses to choose a treatment that is experimental or has not yet been approved by the FDA. We fail them by restricting the ability of physicians to discuss alternative treatments with their patients. I appreciate the incredibly difficult job that the FDA has in approving drugs and medical devices. The time that is taken to review these products helps to ensure that, once approved, they are completely safe for human use and live up to their promises. The length of the approval process, however, also has negative consequences. Individual practitioners, scientists, smaller companies and others who do not have the financial resources or the expertise to complete the arduous FDA approval process are prevented from gaining access to the market. Does that mean that individuals facing a life-threatening illness, who learn of a potential effective treatment, should be denied access to this treatment because it has not yet been approved by the FDA? I don't think so. I think people facing life-threatening illnesses should be able to consult with their physicians and make an informed choice about alternative treatments. Several surveys show that individuals facing life-threatening illnesses already do this, despite roadblocks and barriers. A recent survey showed that about half of all cancer patients use an alternative cancer therapy for the treatment of their illness. Finding and using these options is difficult and risky. A child or adult with advanced cancer will often seek out advice from popular magazines, friends, health food stores, and go to foreign countries in a haphazard and expensive manner in order to seek effective treatment. Despite the fact that the United States leads the world in exceptional medical care, the current system excludes the development and utilization of non-harmful alternative medical treatments that may help patients and generate new approaches to treating illnesses. I support Congressman DeFazio's bill, the Access to Medical Treatment Act, because it will help to open up the system to the utilization of new alternative treatments and allow physicians to discuss these treatments openly with their patients. As a parent and a legislator, I believe that this is the appropriate direction to take to help benefit individuals who face life-threatening illnesses and who desire access to all possible treatments and potentially lifesaving cures. Thank you again for holding this hearing and giving me the opportunity to participate.
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