Back in October 2007, I wrote a post (reposted December 7, 2007) about the Leukemia & Lymphoma Society’s Light the Night event on October 4 where I had worked as a volunteer in their mission tent. It was a bittersweet night for me. I was overjoyed and thankful to be three plus years post-bone marrow transplant, but when I saw the number of red and gold balloons, representing those currently living with a blood cancer and those who have died from the disease, my heart sank.
Two goals (of the many) that the Leukemia & Lymphoma Society is trying to achieve are increasing the number of participants in clinical trials and eliminating barriers to access to clinical trials. Oftentimes, patients do not participate because their insurance carrier will not cover them for routine care such as follow-up doctor’s visits and blood work, which they would be required to have regardless of a clinical trial. It is through clinical trials that we discover innovative treatments and the effectiveness of new drugs.
When I wrote the original post on October 10, 2007, Indiana was one of the many states yet to enact any type of legislation aimed at increasing access to clinical trials. However, today, I received my monthly LLS Advocacy Update newsletter, and as a native Hoosier, I am proud to report that on April 28, the state Senate, and on April 29, the state House of Representatives, unanimously passed legislation to increase access to clinical trials. One of the main parts of this legislation addresses a major barrier to patients entering clinical trials: The refusal of many insurers to cover routine patient-care costs for those enrolled in a trial (as stated in the above paragraph). Apologies for the redundancy, but it bears repeating.
This is extremely positive news! On October 10, 2007, there were 23 states with clinical trials legislation on their books; as of this date, two more states have been added. But there is much work yet to be done. The Advocacy Update newsletter (dated today, May 14, 2009) reports that Rep. David Israel (D-NY), co-chair of the House Cancer Caucus, states: “This year more than 1.4 million people will be diagnosed with cancer and fewer than 5% of them will participate in a clinical trial.” This needs to change. The LLS’s tag line is: Relentless for a cure. I too am relentless for one.
Currently there are legislative initiatives being pursued in several states. The LLS is conducting official state campaigns in Florida, Iowa, New York, and Pennsylvania, and has joined coalition-led legislative efforts in Oregon, South Carolina, and Texas. If you live in one of these states, please get involved. Even if you or a loved one has a cancer other than a blood cancer, there are clinical trials for all types of cancer and other diseases such as diabetes, Alzheimer’s Parkinson’s, and many others. Many times medications approved for one type of cancer or other disease are found to be effective in treating other cancers and diseases, which is why it is of the utmost importance that there is communication and sharing of information between cancer organizations, hospitals, and educational and research facilities.
The Leukemia & Lymphoma Society's Action Center is a good resource for finding out about advances in cancer research, funding for the National Institutes of Health (NIH) and the National Cancer Institute (NCI), cancer care funding, and the various state initiatives which the LLS is working to help implement.
I am one of the lucky ones; I will say it over and over. And because I have been so blessed to have survived my cancer, I am compelled to do something and take action on many different levels in order to raise awareness and inspire others to take action. I hate to dwell on cancer, but it's here, and it's not going away anytime soon. However, I do believe that little by little, we will find cures.
Indiana, thanks for taking the necessary step forward in this fight. I'm proud of my home state!