The following are letters that CCNetwork worked on for all CRC patients:

Letter to Medicare Reform Conferees On Oral Cancer Drug Coverage

“Talking Points” for Calling or Writing Your Congressman and Senator

Beneficiary Access to Care Act of 2003

H.R. 1032 / S. 1206

You can find the names of your Congressmen and their office phone numbers by calling (202) 224-3121

In _(your state)_ alone it is estimated that over (Click here to get your states data new cases of cancer were diagnosed in 2003.

As the colorectal cancer survivor I am very concerned that cancer patients in _(your state)__ are in serious jeopardy of losing access to cancer drugs through hospital outpatient departments — because of reckless cuts in Medicare reimbursement.

The reimbursement today significantly underpays hospitals for the cost of cancer drugs, thus jeopardizing our ability to care for patients.

Previously, hospitals received two payments when giving chemotherapy to a Medicare beneficiary; a payment for the drug and a payment for its administration.

Now, at least half the drugs don’t get paid for at all (because they cost less than $150 or less per use) -again, seriously jeopardizing hospitals ability to continue to providing these therapies.

The other half of the drugs (costing over $150 per use) is still paid – but much less than last year and the year before. The newer breakthrough drugs that cancer patients are so anxiously waiting for are becoming very difficult for us to provide because we aren’t getting paid for them.

On the whole, CMS changed the payment methodology for over 300 that 95% of all drug reimbursement were cut in 2003.

In addition, CMS reduced the reimbursement for almost every type of administration.

The “Beneficiary Access to Care Act of 2003,” H.R. 1032 and S. 1206, provide immediate relief by stabilizing payment rates and ensuring they fall no further under CMS’ payment setting methodologies.

Please cosponsor H.R. 1032 and S. 1206 and work with the Medicare conferees to ensure the House and Senate Medicare packages both contain the provisions to address this crisis and remain a part of whatever Medicare package is sent to the President.

Signed, (If writing, emailing, or faxing) ____________________

If you have further questions about this legislation please feel free to contact Priscilla Savary, Executive Director of CCNetwork at 301-879-1500.

For a list of the highest priority representatives:

Seventeen Members of Congress Deemed “Conferees” for the Medicare Package

For up to date information on the status of this bill:;=108&size;=full

For additional information:

National Patient Advocacy Foundation Briefing on HR 1032

BIO is helping to coordinate an effort of organizations that object to the CMS OPPS rules which could limit physician decisions and patient access to the most appropriate treatments. The following link is a fairly short explanation of the problem –
Biotechnology Industry Organization
1225 Eye Street N.W., Suite 400
Washington, DC 20005
202/962-9200 (main)
202/962-9201 (fax)

THOMAS Legislative Information Access federal legislation by topic or popular title. Includes Congressional Record text, and committee reports.

Congress must legislate to preserve Medicare patient access to innovative treatments

The President and Congress agree that Medicare must be improved to offer all seniors coverage for prescription drugs. Yet recent actions by the Centers for Medicare and Medicaid Services (CMS) will put at risk access to the very important drugs that Medicare covers today. Specifically, the 2003 Medicare Hospital Outpatient Prospective Payment System (OPPS) rule threatens patient access to necessary and appropriate treatment. To protect the interests of Medicare patients, Congress should pass legislation that accomplishes the following:

1. Reform flawed OPPS methodology. Just a few years ago, Congress reformed the outpatient payment process for drugs to ensure that hospitals were not financially penalized when they chose a new therapy for patients. Recent actions by CMS undercut these reforms through use of a flawed methodology to cut Medicare payment for many important therapies by an average of 35 to 50%. The resulting payment is often less than the product’s actual cost, which is unsustainable for those providing care, jeopardizing patient access to these important therapies.

2. Rescind “Functional Equivalence” policy. CMS coined the term “functional equivalence” to justify comparing two drugs or biologicals in order to reimburse them at the same rate – that of the lowest-cost product. The FDA has consistently taken the position that in both a labeling and promotional context, drugs and biologicals may not be characterized as comparable or equivalent unless there is “substantial evidence” to support such a determination. This unprecedented CMS policy focuses on cost, and ignores both patient needs and physician judgment about which therapy is best. Physicians, not a government payment policy, should determine when to substitute one therapy for another based on a patient’s individual needs.

3. Restore radiopharmaceuticals’ status as drugs. CMS has arbitrarily and without justification downgraded the status of FDA-approved diagnostic and therapeutic radiopharmaceuticals declaring them no longer “drugs” or “biologicals.” This substantial change in reimbursement policy was made without notice and violated the statute (Social Security Act) as well as longstanding CMS policy. This redefinition must be reversed to guarantee continued Medicare patient access to these important diagnostic and therapeutic drugs, as Congress clearly intended.

4. Treat all orphan drugs equitably. Although CMS recognizes that orphan drugs treat rare conditions and are only infrequently used, CMS only excluded four “orphan” products from OPPS payments. There are nearly 100 orphan drugs separately reimbursable by Medicare under HOPPS on the market, all of which should have been excluded — not just the four chosen by CMS. These treatments are all critically needed to treat exceptional diseases for which there is often no alternative therapy. Medicare patients with debilitating and life-threatening conditions will be relegated to less effective treatment – or perhaps no treatment at all.

It is vital that Congress not allow CMS to whittle away current Medicare coverage of drugs even as it crafts a drug benefit for all seniors. Patient access to the best therapy to meet medical needs must be the first priority of Medicare!

Respectfully Submitted,

  • Alliance for Aging Research
  • The Amyotrophic Lateral Sclerosis Association (ALSA)
  • Center for Patient Advocacy
  • Colorectal Cancer Network
  • Kidney Cancer Association
  • Mycosis Fungoides Foundation
  • National Association for Continence
  • National Kidney Foundation
  • Parkinson’s Action Network

Talking Points on the Fiscal Year 2004 NIH Budget

"In order to win the war on cancer, we must fund the war on cancer." 
								President George W. Bush

1 A strong Federal commitment to biomedical research and public health programs represents the nation’s best defense against cancer and provides hope of survival to the over 1.3 million Americans who will be diagnosed with cancer this year.

2 The infusion of funding over the past five years has yielded breakthroughs in the prevention, diagnosis and treatment of many diseases, including cancer.

3 For example, research at the National Cancer Institute led to the development of a simple and inexpensive blood test to help detect prostate cancer at an early stage, when it can be treated most successfully. In the past five years, annual prostate cancer deaths have been reduced by 28%.

4 An investment of $56 million in testicular cancer research has enabled a 91% cure rate and a savings of $166 million annually.

5 New treatments have been developed for adult leukemia that utilize molecularly targeted drugs to attack the cancer cells without harming normal tissue. Doctors are now able to provide more effective, less painful therapies at the earliest stages of cancer treatment.

6 Although progress is being made, cancer remains the number two killer in the United States. This year, about 556,500 Americans are expected to die of cancer – more than 1,500 people a day.

7 The National Institutes of Health estimates overall costs for cancer at $171.6 billion in 2002, including $60.9 billion in direct health expenditures.

8 We applaud the Congressional commitment to prioritizing research on health matters, demonstrated by the large investments at NIH over the last five years. However, we are very concerned that a dramatic drop in investment in FY04 may halt promising research.

9 We appreciate the support and leadership of Chairman Specter and Chairman Regula, who are doing their best with an allocation that is not high enough to adequately fund important programs in the Labor-HHS bill.

10 The NIH can still only fund one out of every four meritorious research proposals. This means three out of every four research opportunities are lost.

11 The American Cancer Society and its partners in the One Voice Against Cancer Coalition were disappointed with the President’s Fiscal Year 2004 budget, which called for a 2.5% increase for research programs at the National Institutes of Health.

12 The House Appropriations Committee has agreed with the President’s request to fund NIH at $27.664 billion in FY04. This is an increase of $682 million (2.5 percent) over the FY03 budget.

13 Some have characterized the proposed FY04 NIH budget as an increase of 7 percent if “one-time costs” from 2003 are removed. It is our understanding that these one-time costs include monies spent on intramural and extramural research infrastructure projects, including bioterrrorism facilities. The actual increase proposed by the President and the House for FY04 is only 2.5% above the FY03 NIH budget.

14 The proposal approved by the Senate Appropriations Committee contained a $1 billion (3.7 percent) increase in the NIH budget – $318 million more than the House bill.

15 There is strong support on Capitol Hill for maintaining the momentum gained over the last five years. At the end of March, the Senate voted 96-1 to adopt the Specter/Harkin amendment to the budget resolution, calling for an 8.5 percent increase in the NIH budget in FY04.

16 Unfortunately, the President’s plan called for a small increase for NIH, with most of the new dollars going toward biodefense related projects. The President’s budget explanation stated that in, “FY 2004, the number one priority for the program increases requested in the NIH budget is supporting research needed for the war against terrorism.”

Letter to DEA Administrator Hutchinson
Addressing illegal use and abuse of pain medications such as OxyContin



Dear Administrator Hutchinson:

On behalf of the Cancer Leadership Council, we want to thank you for your thorough and thoughtful response to our concerns about potential regulatory excesses in connection with federal oversight of certain pain medications. (See your November 7th, 2001 letter responding to our September 19th correspondence with Congress.) As advocates for aggressive and appropriate pain and symptom management, we found your comments balanced and reassuring.

As you know, in the FY 2002 funding bill for the Department of Justice, Congress indicated to the Drug Enforcement Administration that it expects a targeted approach to address and prevent abuse of OxyContin in rural areas, particularly in certain areas of the southern United States. While we have no objection to rigorous enforcement against abuse of this and other drugs designed to address pain, we also believe it is important to sustain the balanced approach reflected in your November 7th letter and in the October 23 Joint Statement between DEA and health organizations. Many of the regions most affected by OxyContin abuse also are medically underserved and are thus likely to have fewer resources specifically dedicated to pain management, including cancer pain.

Therefore, we hope that, as you carry out your mandate to address abuse of OxyContin in rural communities, you will also continue to recognize the legitimate role of such medications in the management of pain caused by cancer and other serious and life-threatening diseases. To the extent that your Administration takes steps to discourage inappropriate use of these drugs, we hope you will support the efforts of organizations such as ours to promote public and professional education regarding pain management. We are encouraged that your November 7th letter clearly states that the DEA will rely upon the medical community to make determinations about legitimate medical uses of pain medications.

We urge you, in the spirit of collaboration and cooperation that resulted in the October 23rd Joint Statement, to seek the input of representatives from the health professional and patient advocacy communities as you formulate strategies to address illegal use and abuse of pain medications such as OxyContin. Creating further dialogue with the medical and patient communities would help to ease the fears of medical professionals that they will be improperly targeted by the DEA for appropriate use of pain medications. The dialogue would also help ensure that enforcement strategies will not present barriers to patients who need to access pain medications.

Thank you again for your informed interest and involvement in these issues of paramount importance to people with cancer, their caregivers, and their families. Please do not hesitate to contact any of the undersigned organizations if we can be of any assistance to you or your staff.

-Colorectal Cancer Network in conjunction with the Cancer Leadership Council

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