Research is the key that unlocks new treatments for lung cancer patients. Prior to my own lung cancer diagnosis, I did not give much thought to cancer research. If I thought about it at all, I assumed cancer research was not political. Perhaps it’s not exactly accurate to say cancer research is political. It is, however, important to understand how decisions are made to fund cancer research.
How Is Cancer Research Funded?
The majority of cancer research is funded by the federal government. The National Cancer Institute receives its budget from the U.S. Congress as part of the federal budget process through appropriations for the Department of Health and Human Services and the National Institutes of Health. It’s simple, really. Americans impacted by cancer, or any disease, write their Congress member requesting research funding to advance science that will ultimately improve Americans’ health and quality of life.
An excellent example of this model is HIV-AIDS research funding. In the early 1980s, insensitivity, fear, blame, stigma and uncertainty surrounded this disease. Nonprofit organizations understood the situation and the great need. These organizations began advocating for and serving the HIV-AIDS community. Before long, the federal government began funding research for HIV-AIDS. Today, scientific advances enable Americans with HIV to live long, healthy lives.
Advocating for Lung Cancer Research
That approach will also work for lung cancer research. In fact, it already has. Lung Cancer Alliance, a nonprofit based in Washington, DC that advocates Congress for lung cancer research, was successful in getting the Department of Defense to fund lung cancer research. To date, the Congressionally Directed Medical Research Program has funded more than $100 million for lung cancer research. Considering, however, that the Congressionally Directed Medical Research Program has funded more than $3 billion (yes, with a “b.”) for breast cancer research, there is much more advocacy work to be done on behalf of the lung cancer community. That’s where you come in! There are activities great and small that anyone can undertake to help make a difference. You can write a letter or call your Congress member and share your story. Be sure to mention that even though lung cancer is the number one cancer killer, it is the least funded in terms of federal research funding. Consider connecting with an organization that knows the ins and outs of lobbying Congress for research funding. Lung Cancer Alliance, the American Lung Association, LUNGevity and others have training programs and opportunities to visit Capitol Hill to advance lung cancer research or similar activities.
Today lung cancer screening is covered by Medicare and Medicaid. But that did not happen by chance. There was a significant collaborative advocacy effort directed toward this initiative. Without going into details here, let me assure you it was a fierce battle! But we won!
In addition to advocating through your Congress members, there are opportunities to actually review lung cancer research proposals. The Congressionally Directed Medical Research Program is always searching for lung cancer patients/survivors to do this. They even pay advocates for their work.
Also, the American Society of Clinical Oncologists, through the Conquer Cancer Foundation, needs patients/survivors to review lung cancer research proposals. Currently, I am reviewing those proposals for ASCO. There is no pay for this project; it is a labor of love.
Whether you speak to your Congress member on the phone, write a letter, or trek to Capitol Hill, no one can express the need for lung cancer research funding better than someone like you, who has been personally affected. Few things in your life will make you feel as empowered as doing this.
Where Can I Learn More?
Below are links to learn more about how you can make a difference: