United States Capitol Building

Dear Advocates,

Your efforts are making an impact. Every time you exercise your right as a US citizen to communicate with Congress, you are changing the landscape for colorectal cancer patients. We applaud you for your passion and advocacy.

Has Your Representative Cosponsored H.R. 1070? ACTION REQUESTED

Rep. Charlie Dent (R-PA) introduced on March 15 the “Removing Barriers to Colorectal Cancer Screening Act,” (H.R. 1070).The bill would waive Medicare beneficiary coinsurance for colorectal cancer screening colonoscopy when a polyp is removed.  As of May 16, the bill had 28 cosponsors. To find out if your representative has cosponsored H.R. 1070 go to www.thomas.gov and search by bill number.  If your representative has not cosponsored H.R. 1070 please contact your representative’s office at 202-224-3121 and ask for their cosponsorship of H.R. 1070.

Still Looking for a Republican 

Sen. Sherrod Brown (D-OH) has agreed to introduce the companion measure to H.R. 1070 in the Senate. Sen. Brown is expected to introduce his bill in the near future; however, introduction has been delayed with Sen. Brown’s preference to introduce the bill with a Republican.

Kudos to Rep. Charlie Dent

On March 29, the Lehigh Valley News published a letter written by Fight Colorectal Cancer president Carlea Bauman commending Rep. Dent for his leadership on the Medicare coinsurance issue. The letter was submitted in response to a letter published in the paper that criticized Rep. Dent for appearing in advertisements published in the Morning Call and Express Times encouraging Pennsylvanians to get screened for colorectal cancer.  The ads were paid for by the Courtney Anne Diacont Memorial Foundation.

President’s Budget Cuts CDC Colorectal Funds 

In April, President Obama released his FY 2014 budget which would cut nearly $4 million from the Centers for Disease Control and Prevention’s (CDC) Colorectal Cancer Control Program (CRCCP). The CDC estimates that the loss of funding will mean at least five fewer state programs (out of the current 29) working to prevent colorectal cancer. The president’s budget assumes that less federal funding is needed for direct screenings, such as colorectal, breast, and cervical screenings, because most health plans are required to cover these screenings without co-pays or deductibles, and because, starting in 2014, the Affordable Care Act ensures that no one can be denied health insurance because of a pre-existing condition. Fight Colorectal Cancer will be advocating preserving current CRCCP funding levels and will need your help. Stay tuned. (Read Fight Colorectal Cancer’s statement on this issue.)

Fight Colorectal Cancer Meets with CDC Officials

On May 8, 2013, Fight Colorectal Cancer was represented at a meeting with officials from the CDC to discuss how funding for the CRCCP and the National Breast and Cervical Cancer Early Detection Program can be protected in an era of health care reform.

House Lawmakers Support Funding for CRCCP – GREAT JOB ADVOCATES!

Thanks to all the Fight Colorectal Cancer advocates who asked their representatives to sign a letter in support of the CRCCP. The letter was circulated by Rep. Donald Payne, Jr. and called upon appropriators to fully fund the CRCCP in FY 2014. Rep. Payne was joined by 53 of his House colleagues on the letter.

Action on FY 2013 Spending Bills Complete 

In March Congress completed work on FY 2013 spending bills. The Labor-HHS-Education spending bill was finalized as a continuing resolution, meaning that programs, including the CRCCP will be funded at FY 2012 levels through the remainder of the fiscal year which ends September 30. The CRCCP is funded at $43 million which will be subject to sequestration and other rescissions. Fight Colorectal Cancer has learned that state colorectal cancer programs will be notified at the end of June by CDC of their FY 2013 funding allocations.

DoD Cancer Research Program Gets Funding Boost – GREAT JOB ADVOCATES!

In March Congress passed and the President signed into law a FY 2013 Department of Defense spending bill. The bill provides $15 million for the Peer Reviewed Cancer Research Program (a $2.2 million increase over FY 2012).

NIH Takes Cut for FY 2013

The FY 2013, when sequestration and department transfers are accounted for, the National Institutes of Health (NIH’s) FY 2013 budget will be $28.926 billion (compared to $30.623 billion in FY 2012) and the NCI’s budget will be $4 .779 billion (compared to $5.069 billion in FY 2012).

Glimmer of Good News for NIH Funding

In a bit of good news for NIH funding, Sens. Durbin (D-IL) and Moran (R-KS) were successful in including an amendment to the Senate Budget Resolution that would create a deficit-neutral reserve fund that effectively provides a framework for growth of the NIH budget over the next decade. Establishing a reserve fund allows the Budget Committee chair to adjust the budget resolution’s overall spending and revenue limits and the spending allocations for particular congressional committees to ensure that legislation accomplishing a reserve fund’s goal — in this case, increasing funding for NIH research — will not be subject to a procedural bar if it breaches those limits or allocations, so long as the legislation does not increase the deficit.

President’s Budget Offers Slight NIH Funding Increase 

President Obama’s FY 2014 budget request includes an NIH funding increase of $471 million (a 1.5 percent increase) over FY 2012 amounts. The NIH estimates this would result in 351 more research project grants in FY 2014.

Patient Equal Access to Chemotherapy Bill Introduced – ACTION REQUESTED

The “Cancer Drug Coverage Parity Act” (H.R. 1801) was introduced by Rep. Higgins on April 26. The bill requires insurers that cover anticancer medications that are intravenously administered or injected to provide no less favorable coverage for oral anti-cancer medications. Please email your representative to urge him/her to cosponsor this legislation.

The U.S. Supreme Court heard arguments Monday in a case that both sides consider absolutely vital to the future of medical research.

The case: Can a company take out a patent on a human gene? Or, as the company Myriad Genetics told the Court, not actually a patent on a gene, but a patent on isolated sections of DNA molecules that they synthetically re-create in the lab to make a test for the gene.

Patents were created 150 years ago in the Constitution as temporary protection of new inventions, thus giving economic incentive for inventors. But there is a clear rule that you cannot patent “a product of nature.”

During oral arguments on Monday, justices batted back and forth discussions of making everything from baseball bats to chocolate chip cookies, as they probed lawyers’ arguments about whether the patent was for a human gene (a product of nature)—or for “a new chemical entity,” as company argued in its legal brief, created through a complicated isolation process into a synthetic section of DNA to be used as a gene test.

Thirty years ago, scientists at the Utah biotech company Myriad painstakingly unraveled the 20,000 human genes that exist in a “6-foot-long molecule that’s coiled and compacted, and stuffed into each cell”. They beat other researchers in the race to isolate two genes, known as BRCA1 and BRCA2. Mutations in those genes greatly raise the risk of breast and ovarian cancer, and that risk that can be passed on to the next generation.

Myriad holds the patent and thus sells all tests for BRAC1 and BRAC2—at least for two more years until its patent expires. Myriad and others in the biotech industry argue that invalidating gene patents would threaten billions of dollars they’ve invested in creating genetic tests, drugs, vaccines, even genetically modified crops.

Opponents from the scientific and patient advocacy community argued that no company should hold rights to what is part of a human body, because it could hinder research and in fact has hindered patient access to lifesaving information turned up in clinical trials.

The Supreme Court justices today “seemed skeptical…that human genes can be patented,” reported National Public Radio’s long-time court reporter Nina Totenberg. She cited Justice Sonia Sotomayor’s remark that it seemed ‘the isolation [of the gene] itself is not valuable,’ but rather what’s done with the isolated gene. The government’s Solicitor General Donald Verrilli agreed that a gene cannot be patented, but he noted that the cDNA—the synthetic substance derived from DNA–could be patented, leaving the gene available for general research.

That’s when they got into making cookies, and baseball bats out of trees. Justice Stephen Breyer noted, “The patient law is filled with uneasy compromises.” If you develop a new process to extract sap from a plant that can cure cancer, he said, you could patent the process, but ‘what you can’t patent is the sap itself.”

Has the horse already left the barn….or is the barn burning

Myriad’s patents at issue will expire over the next two years, and according to an April 14^thNew York Times article. ”Experts say a relatively small number of other diagnostic tests or drugs are protected by patents on single genes….It will soon be possible to sequence a person’s entire genome for less than the $4000 that Myriad charges to analyze just two genes,” and most experts believe that whole-genome sequencing might not infringe on single-gene patents.

However, two researchers reported a study in the March 25 journal Genome Medicine that there are more than 40,000 patents on DNA molecules, essentially covering the whole human genome.

Credit: XnY hateZ/Fotolia

“If these patients are enforced, our genomic liberty is lost,” lead author Dr. Christopher Mason of Weill Cornell Medical College told Science Daily on March 25^th, referring to the upcoming Supreme Court case. “Just as we enter the era of personalized medicine, we are ironically living in the most restrictive age of genomics.”The research team studied two types of DNA sequence patents—for long and short fragments. They found that 41 percent of the human genome is covered by longer DNA patents often covering whole genes. But the short-fragment patents covered DNA sequences that are found in many genes, and even outside of genes, covering virtually the whole human genome. The study examined a Myriad-patented small sequence within BRCA1, which they found in at least 689 other genes; and found the company’s patents technically cover 19 other cancers plus brain development.

Dr. Mason said he undertook the study because he knew that, in his own research into brain and cancer disorders, he was studying genes or sequences actually covered under patents. “I’m extremely pro-patent,” he said, “…but I believe individuals have an innate right to their own genome…Failure to resolve these ambiguities perpetuates a direct threat to genomic liberty.”

Who owns you, and your genes? The court case is just the opening measure in this song.

  Sources:

• “Supreme Court Asks: Can Human Genes Be Patented?”, a 7-minute NPR story explaining court case, April 15, Morning Edition  
• “Justices Appear Skeptical of Patenting Human Genes,” NPR summary of court session April 15  All Things Considered,   
• “You Don’t ‘Own’ Your Own Genes: Researchers Raise Alarm About Loss of Individual ‘Genomic Liberty’ Due to Gene Patents,” Mar. 25 2013 Science Daily,  
• “Justices Consider Whether Patents on Genes Are Valid,” April 14 New York Times  
• “Are Human Genes Patentable?” April 12 ScienceDaily

Disclosure: Fight Colorectal Cancer has accepted funding from Myriad Genetics in support of its patient education program. Fight Colorectal Cancer has ultimate authority over website content.

Carlea Bauman, President of Fight Colorectal Cancer

I am deeply disappointed that President Obama’s fiscal year (FY) 2014 budget would strip nearly $4 million from the Centers for Disease Control and Prevention’s (CDC) Colorectal Cancer Control Program. The CDC estimates that the loss of funding will mean at least five fewer programs (out of the current 29) working to prevent colorectal cancer.

The president’s budget assumes that less federal funding is needed for direct screenings, such as colorectal, breast, and cervical screenings, because most health plans are required to cover these screenings without co-pays or deductibles, and because, starting in 2014, the Affordable Care Act ensures that no one can be denied health insurance because of a pre-existing condition.

However, a number of barriers contribute to low colorectal cancer screening rates, such as lack of awareness and misinformation about screening – not just lack of health coverage. A well-funded colorectal cancer control program is needed to support important awareness and education initiatives across the country.

The hopeful news is that Congress does not have to accept the President’s budget. I urge colorectal cancer patients, survivors, caregivers, and physicians to let their members of Congress know that a cut to the colorectal cancer control programs at the CDC is unacceptable.

On a positive note, the President’s budget would increase research funding to the National Institutes of Health (NIH) by $471 million (a 1.5 percent increase) over FY 2012 amounts. The NIH estimates this will result in 351 more research project grants in FY 2014.

I recognize that the President and Congress are budgeting in a difficult economic environment, but our country needs dynamic thinking from our policymakers when it comes to budget decisions. Preventing colorectal cancer and targeted treatment reduce downstream costs to our health care system and to our federal government. That makes good budget sense to me.

) photo by ThinkProgress

The annual scientific meeting of the American Association for Cancer Research took a little lunch break on Monday, April 8th in Washington, D.C., while the attendees streamed outside to join a crowd of several thousand gathered across the street for a loud street rally.

“When [Congress] sees a grassroots movement rising up from doctors, from scientists, from advocates, and patients, you become impossible to ignore,” cancer survivor Rep. Rosa DeLauro (D-CT) told the cheering crowd. (Watch video of the speakers here.)

Fight Colorectal Cancer was one of 200-plus organizations who gathered and supported the  Rally for Medical Research, aimed at the politicians who have made, and are making,  decisions about budget cuts. The sequester alone will cut about $1.5 billion from the National Institutes of Health, and with overall budget cuts, NIH will lose about $12.5 billion over the year.

Penny-wise, pound-foolish: Research cuts mean lost jobs

Speaker Marc Tessier-Lavigne, Ph.D., president of Rockefeller University, pointed out that NIH total spending comes to about $100 per person in the U.S. each year, compared with that person’s yearly health costs totaling around $8000.

The main scientific organizations, including AACR (the American Association for Cancer Research) at its current annual meeting, point out that those NIH cuts alone will likely result in the loss of a half-million jobs, and an estimated $860 billion in economic growth over the next nine years. In fact,, federal investment in the largest-ever scientific collaboration, the Human Genome Project, paid off wildly: the economy gained $140 for every $1 in federal support over 5 years–not to mention the warp-speed increase in genetic knowledge about every major disease.

Scientists Honor Katie Couric

The AACR also took time to award colorectal cancer activist and journalist Katie Couric with its 2013 AACR Award for Distinguished Public Service, for all her work fundraising for research and drawing the public’s attention to cancer screening and treatment. She told the crowded hall, that “with 18,000 scientists gathered here, there are enough synapses firing in this room alone to power a nuclear reactor….To stand here in front of all of you is truly humbling….I consider myself the unofficial but highly enthusiastic cheerleader for the people who do research in cancer.”

Five years ago, she said, ” We could not tolerate the fact the NCI could only fund 1 in 10 of grant proposals,” so a dozen “truly Type A women” founded Stand Up To Cancer, emphasizing teamwork, tight time frames, and true collaboration with five “dream teams” (now grown to 10) taking on out-of-the-box ideas to beat cancer. (See the video about Katie Couric, followed by her speech, here.

Stay tuned…more to come

Fight Colorectal Cancer is well represented at AACR: stay tuned.

Sources: The Rally for Medical Research, reported on by The Hill, by HealthWatch , and “Thousands Rally for Medical Research in Washington, DC”, Apr. 8 Medscape Oncology News; news from AACR Annual Meeting, Tuesday Daily Alert. 

Each year at Call-on Congress, Fight Colorectal Cancer gives out three awards to advocates who go above and beyond to advance the cause of colorectal cancer patients. The 2013 award recipients are:

The Andrew Giusti Memorial Award was posthumously awarded to the late Kate Murphy for her tireless activism on behalf of colorectal cancer patients and for focusing, like Andrew Giusti did, on pushing for great science that will translate to patient benefits as quickly as possible.

Kate was a founding staff member of Fight Colorectal Cancer and our Director of Research Communications. She was the first patient advocate to ever sit on the National Comprehensive Cancer Network’s Colon/Rectal/Anal panel, which develops treatment guidelines for oncologists. She also served on nearly a dozen other scientific committees, always staying true to the needs of the colorectal cancer patient and challenging researchers to do better on their behalf.

Kate passed away from Lynch syndrome-related colorectal cancer in October 2012. Her husband Tom received the award at Call-on Congress.

Andrew Giusti was a former Board member, scientist and colorectal cancer patient. This memorial award honors advocates who work in the research environment. Andy was a superb research advocate. He was working on a vaccine against colorectal cancer when he was diagnosed in 2005 with stage IV colorectal cancer at the age of 40. He passed away in 2010.

The Advocate of the Year Award went to husband and wife team Eric and Rose Hausmann of New Jersey.

Through the years, they have raised over $30,000 for Fight Colorectal Cancer through local events, attended Call-on Congress for five years in a row, served as mentors to new advocates, represented Fight Colorectal Cancer at countless speaking events, filmed this amazing screening awareness PSA and were instrumental in getting their two senators from New Jersey to introduce a resolution proclaiming March 2013 Colorectal Cancer Awareness Month.

Individually, they are amazing people with the strength to get through Rose’s stage IV colorectal cancer while still fighting to advance the cause. Together, they are a force to be reckoned with.

Rep. McGovern with Massachusetts advocates Amy Robert (left) and Caitlin Gambee

The Congressional Champion Award was presented to The Honorable Jim McGovern (MA-2).

Rep. McGovern has strongly supported colorectal cancer legislation for many years.

He cosponsored HR 4120 in the 112th Congress that would remove barriers to screening colonoscopy for Medicare patients, co-authored a Dear Colleague letter in 2012 urging his fellow members of Congress to wear blue on the day of Fight Colorectal Cancer’s Call-on Congress visits to Capitol Hill, led a 2012 sign-on letter to House appropriators in support for funding for the the colorectal cancer program at the Centers for Disease Control and Prevention, led introduction in 2009 with Rep. Kay Granger (a past recipient of the Congressional Champion Award) of the Colorectal Cancer Prevention, Early Detection and Treatment Act, and spoke at 2011 press conference in support of colorectal cancer screening.