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CancerLynx - we prowl the net
October 4, 2000

Call to Action
Ruth Wolf

Last week my husband and I were in Washington,. D.C. at the 2nd Annual Patient Advocacy Congress. The conference was excellent. We learned a lot and also contributed. We visited legislators on capitol hill to urge passage of certain health care bills. I will write what each of us can do.

Patient's Bill of Rights
Ensure coverage for the routine patient care costs for those enrolled in clinical trials. Hold health plans accountable for inappropriate denials of care Guarantee access to specialists, including out-of-plan providers
Note from Ruth - This is not the Norwood Dingell Bill which is supported by insurance companies. The above bill is supported by drs., patients, and patient advocacy groups

Coverage of Cancer Clinical Trials
We were told that on Tuesday, Sept. 19th there was a Medicare ruling that Medicare would now cover clinical trials. We were also told that many private insurers follow Medicare guidelines. Medicare reimbursement
Medicare Prescription Drug Benefit
Enact a strong Medicare prescription drug benefit meeting the following standards: Participation is open to all Medicare beneficiaries through voluntary enrollment The program is administered by private entities The prescription drug benefit does not rely on price controls, but instead ensures fiscal integrity through competitive bidding and negotiation procedures Physician judgment is not compromised by restrictive formularies or theraputic substitution. The role of the pharmacist as a point of access and source of counseling will be preserved. Prompt independent review of any adverse decision with respect to coverage or payment will be guaranteed.
Medicare Coverage of Injectible Drugs
Medicare Coverage for Oral Anti-Cancer Drugs
Use enactment of legislation to amend Medicare Part B to provide payment for oral anti-cancer drugs, even if they are not a replacement for an intravenous drug: Coverage under Part B will ensure that off-label uses of approved drugs will be reimbursed; Beneficiary out-of-pocket costs will be restrained; and Oncologists will remain involved in all aspects of cancer care.

Pediatric Exclusivity
Federal Funding of Embryonic Stem Cell Research Issue Encourage NIH funding of research that utilizes stem cells, as long as researchers in the field meet high ethical standards including: Assurances that individuals donating fetal tissue or embryos are aware of the research use of their donation and provide informed consent Guarantees that donors are not provided unethical incentives to donate.

So if any of you can write your state's federal legislators it would help all of us.
Thanks Ruth Wolf

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