Wayne Wells is a 68 year old male, a Vietnam veteran and small business owner living in Cameron NY, he is also an Atlatl (spear-thrower) enthusiast and pursues canoeing and X-countryskiing.
He was forced into retirement in 2006 due to diagnoses with a cryptic form of aggressive CLL (Chronic Lymphocytic Leukemia) which the Department of Veteran Affairs has determined was caused by exposure from Agent Orange during his service in the Vietnam war.
Wayne explains his particular variant of the disease:
“CLL is a highly heterogeneous disease. It’s difficult for even the experts to give an accurate prognosis or to predict therapy outcomes. I fall into the category of “discordant” meaning that I have a much more complex and aggressive disease than testing had predicted.
Because CLL is a cancer of the immune system there are often autoimmune conditions which arise the disease. Most are hematologic autoimmunities such as ITP (Idiopathic Thrombocytopenia Purpura) and AIHA (Auto-Immune Hemolytic Anemia) but I developed a rare non-hemic autoimmunity that has not yet been defined by my CLL expert, my Nephrologist or my Immunologist.”
How has open access to the scientific literature helped you in making treatment decisions?
“When I failed my first treatment protocol due to a deadly reaction to the drug Fludarabine, I recovered but with damaged kidneys from ATN (Acute Tubular Necrosis). My next attempt at treatment put me temporarily in a wheelchair and left me with a dwindling selection of treatment options. I had been studying CLL through free access articles on PubMed and Google Scholar where I found NIH-supported research papers that helped me to understand my disease, its mechanisms of action and the strategies of a growing number of developmental drug protocols.
Reading these NIH papers enabled me to have an intelligent dialogue with a CLL specialist, ultimately leading me to the selection of a clinical trial using a kinase inhibitor. This is currently holding my cancer at bay without killing me in the process. I also found much useful research, published in full, coming from Europe and specifically Britain where more research is made freely available.”
A constant theme of the stories coming out on Who Needs Access? is that citizens perform a variety of civic roles which require a knowledge of the scientific literature, including being members of research and bioethics panels and helping to make important decisions regarding medical research and drug trials:
“Lay citizen participation with cancer organizations like the Leukemia & Lymphoma Society and Lymphoma Research Foundation, and the growing importance and need for patient networking Internet forums, demands educated inputs. This means we need as much free access to research information as possible. In my capacity as a Consumer Reviewer for the DoD (Department of Defense) I sit on blood cancer research panels with scientists. I am tasked with evaluating which research proposals are best suited for funding, from a patient perspective. In this endeavor I spend many hours familiarizing myself with cancer biology and drug development information related to many variants of blood cancers and lymphomas. There are over 145 combined “species” all demanding somewhat different treatment approaches.
Within an ever expanding arena of drug protocols to halt or cure cancers, the safety issues and appropriateness of medical technology becomes exciting and difficult to judge. Without free access to appropriate research articles this task is nearly impossible to do well. This vital activity of educating patients and bringing funding to the best research can be greatly enhanced by free access to publicly funded research or inhibited by restriction in the quest of profits by a few publishers.”
“My cancer journey and need to stay on top of drug developmental approaches is far from over as my cancer is currently incurable. I hope to continue being useful as an informed consumer reviewer to help bring the best ideas for cancer drug development and understanding to fruition as quickly as possible for all blood cancers and lymphomas.
I and many others who care about disseminating accurate information about our cancers and treatments to our respective online patient forums (not to mention other diseases) are much angered over the introduction of H.R. 3699 by Rep. Maloney who is apparently more interested in pimping for publishers than helping to maintain or enhance the free-access flow of tax-paid research that could save the lives of those unfortunate enough to be victims of disease.”
Citizens are more and more being called upon to provide their opinions on research, with patient reviewers encouraged by both US and UK health policies. It’s unacceptable that those performing a civic duty don’t have open access to past research (which they funded via their taxes) in order to improve future research (for which they and their compatriots will also pay).