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Show A new platform for patient advocacy DEREK EDWARDS W hile the chronically ill have always been something of a disenfranchised class, the Internet and social media now provide patients with a unique opportunity for collective self-advocacy. Jenny Ahlstrom and Liz Smith are two such patients who have recognized and embraced this opportunity. Their work provides an excellent example of how patients can and should utilize the connectivity of the Internet to advocate for themselves. Both Utah women are myeloma survivors. Their website, myelomacrowd.org, is an example of successful cancer patient advocacy. "We met because I went on Twitter," Smith said. She and Ahlstrom connected in Utah Valley after each discovered that the other was a myeloma patient. Myeloma is a cancer of the plasma; like many people, I hadn't heard of it before. Extremely rare in those under 40, it's a serious disease not only because it is a cancer, but also because it attacks the immune system. Ahlstrom was already working on launching a myeloma website when she met Smith, who has a background in marketing and public relations. They've since successfully created an exemplary online patient community that has an influential voice at important cancer research centers like the Huntsman Cancer Institute and the Myeloma Institute for Research and Therapy at the University of Arkansas for Medical Sciences. Myelomacrowd.org works to connect myeloma patients and those caring for them. Ahlstrom and Smith have eschewed the site-specific forum model, instead opting to reach out to myeloma patients with existing platforms like Twitter and Facebook. It's important that patients find ways to connect with clinical researchers and trial therapies. Ahlstrom stresses this point: "One of the key problems in cancer research is that, in adult cancers, less than five percent of the patients participate." It's not easy for adult myeloma patients to try to find myeloma-specific treatment, so many end up looking to their local general oncologist for care. INTERNS AND DJs WANTED! "If you have a specialized disease like myeloma, you really need to see a specialist ... I started this [website]...because I was trying to get patients educated so that they would want to join the clinical trials." Their website has been providing patients with clinical trial information and evaluations via outlets like mPatient Radio, making sense of different approaches to treatment, and connecting patients with the same variants of the disease with the goal of increasing access to clinical trials. This approach has been adopted not only to accelerate research by increasing trial patients, but also to help patients get better treatments that have been shown to be more effective in treatment of their variant of cancer. They are not the first myeloma patients to benefit from this approach. Ahlstrom recalls the story of Stacy Erholtz, a myeloma sufferer who made headlines when she beat her cancer with a modified version of the measles virus after proactively getting herself into a clinical trial at the Mayo Clinic. Patient-driven advocacy can and should extend to funding research. The organization over myelomacrowd.org , the CrowdCare Foundation, is now using the collec- Gain Experience Meet New People Speak Your Mind apply online today @ kuteradio.org tive voice of its patient community to help drive research through crowdfunding for myeloma research projects. The organization is choosing projects from proposals from the patient community, vetted by both scientific and patient advisory boards, and is planning on introducing them at an international hematology conference in December. The organization already has one crowdfunding project in motion, the Kickstarter campaign "Songs for Life," a music project intended to raise money for cross-cancer research. The Internet provides formerly underrepresented groups, such as patients with an advocacy solution, but only if members of those groups individually step up to the plate and participate in the process. "We've been waiting on a cure for cancer for some time now. Something has to change. Our premise is that patients have to be more involved in helping to accelerate the cure," Ahlstrom said. Patients should recognize that they can assist research, find better healthcare solutions and better advocate for themselves by reaching out to the burgeoning online patient community. letters@chronicle.utah.edu 0110.0 G IN SEARCH . FOR KUTE ON THE MOBILE APP tunein =6 RADIO \Noe Studio: University Union, 4th Floor 10 { THECHRONY I NEWS I OPINION I ARTS I SPORTS I THURSDAY, NOVEMBER 20, 2014 CHARLES MANSON AND HIS NEW WIFE WELL, HE ASKED... AND HE'S SUCH A CHARMER, I JUST COULDN'T SAJ NO! CANADA HURTS MORE THAN HELPS I he Senate rejected a bill to approve the last leg of the Keystone XL pipeline on Tuesday night. Fourteen Democrats and all 45 Republicans voted in favor of the bill, which landed just one vote shy of passing. Over the ensuing applause from environmentalists and sensible folks across the country, incoming majority leader Mitch McConnell promised to bring the bill back to life when the Senate reconvenes in January. The next time around, the chances of hearing cheers from this country's climate-conscious constituency will be slim. Come January, Republicans will dominate the house, and according to John Hoeven, a republican from North Dakota who sponsored the bill, there will be plenty of support for its passage. Hoeven estimates that he will be able to garnish 63 favorable votes in the new Senate, which is enough to pass the bill but not enough to override a presidential veto. Assuming the senator is correct, the question becomes: Will President Obama veto the pipeline? Last Wednesday, President Obama forwent an agreement with China's President Xi Jinping, whereby both nations pledged to curb climate change by cutting carbon ennissions.The President committed the U.S. to reduce greenhouse gas emissions to 28% below the 2005 level by 2025. It seems unlikely that, following this globally publicized promise, the President would approve a project designed to pump out 830,000 barrels of crude oil per day. However, the annual increase in carbon emissions resulting from the pipeline would be less than one percent of the U.S. total output. Although crude oil is 17 percent more carbon intensive than regular oil, most experts agree that the pipeline would not have a significant impact on the global carbon budget. According to the International Energy Agency, we can "safely" emit 825 more gigatons of carbon into the atmosphere before climatic chaos ensues. The estimated 18.7 million additional tons of carbon that the Keystone XL pipeline would contribute annually is a miniscule fraction of the total budget. In light of this information, advocates of the pipeline have wondered why its construction should hinge upon climatic, rather than economic, concerns. Proponents of the pipeline have asserted that it would produce jobs and reduce the price of gas, boosting the American economy. Yet a State Department report revealed that it would create a whopping 35 permanent employment positions, and would have no effect on domestic oil prices. The pipeline's overall impact on the American economy would be more inconsequential than its impact on the global carbon budget. While it may be the case that the Keystone XL pipeline would not add a significant sum of carbon to the atmosphere, relative to global outputs, approving it would signal to the world that America is still a slave to the fossil fuel industry and is thus incapable of leading the charge against climate change. Are we seriously willing to trade 18.7 million tons of carbon per year, for the next century or more, for 35 crummy jobs? The only party that stands to gain from this deal is the oil industry. Americans encumber the environmental and health risks associated with potential leaks and spills, while TransCanada and company continue to reap the rewards of dirty oil. We can no longer employ the excuse of naivety, or uncertainty to justify making climatic concessions to silver-tongued oil salesmen, in exchange for hollow promises of economic growth. A long, successive string of such seemingly insignificant allotments to petroleum peddlers has landed us in our current planetary predicament. Come January, I expect President Obama to take a much needed, long overdue stand against big pollution and proclaim to the world that America is ready to practice the environmental and social responsibility that it preaches. letters@chronicle.utah.edu 11 |