Awareness Matters When it Comes to Funding Research for Rare Diseases
The month of July is Sarcoma Awareness Month and this is a case where awareness may really truly matter. Most patients diagnosed with sarcoma have never heard of anyone else with the rare disease. I sure wish I wasn’t one of those persons who had ever been faced with the knowledge that a loved one will lose his life to this devastating form of cancer. But now that I am, I hope sharing this information will help you or your family in case you ever have to discuss treatment options with your doctor about sarcomas.
Sarcoma is a cancer of the body’s connective tissues and, although it is most often diagnosed first in the limbs, it can be found anywhere in the body – on muscles, nerves, joints, bone, fat, and blood vessels. Some call sarcoma a “bad-luck cancer” because it is very rare and very deadly. About half are resistant to any form of treatment. The tumors are also typically hidden deep within the body, making diagnosis difficult. When the cancer is found, the tumor is often very large and the cancer has metastasized (spread to other areas of the body).
The Sarcoma Foundation of America (SFA) notes that there are about 12,000 new cases of sarcoma diagnosed each year and, at any one time, about 50,000 patients and their families are struggling with the disease. About 5,000 patients die each year.
Doctors and scientists are not really sure why some people develop sarcomas while the vast majority do not. Some studies suggest that chemical exposure, particularly to phenoxyacetic acid in herbicides and chlorophenols in wood preservatives, increase risk. Exposure to vinyl chloride, used to manufacture certain plastics, also has links to sarcoma cancers.
Genetic alterations or certain inherited diseases may also lead to the development of sarcoma. For example, those with h Li-Fraumeni syndrome (associated with alterations in the p53 gene) or von Recklinghausen’s disease (also called neurofibromatosis, and associated with alterations in the NF1 gene) are at an increased risk of developing soft tissue sarcomas. Some sarcomas develop in “clusters” within families – but this represents a very small fraction of cases. Typically sarcoma is a completely random event, says the SFA.
Unfortunately, rare diseases receive fewer research funds than those that affect more of the population. Sarcoma is one of these diseases. The National Cancer Institute’s budget for providing funds for cancer research is about $4.8 billion, but only about $5 to 10 million is estimated to be going toward helping find new therapies for fighting sarcoma.
“There’s not a ton of research being done because pharmaceutical companies want to invest where they will get more results,” says Matt Alsante, executive director of the Sarcoma Foundation of America. “That and the fact that there are so many different subtypes (about 100) makes sarcoma so much more challenging.” There is a dire need for increased funding to support more research into sarcoma.
Today, my father, only 67 years old, is fighting for his life with soft-tissue sarcoma that was diagnosed in December 2011. Unfortunately, it appears that the cancer is winning.
But, you can help. The mission of the Sarcoma Foundation of America is to advocate for increased research to find new and better therapies with which to treat patients with sarcoma and much of these efforts are grass-root through activities and fundraisers happening in your area now.
The SFA also offers many avenues for you to promote awareness for sarcoma cancers - and more awareness helps in so many ways. When the general medical community understands rare diseases that they do not see on a daily basis, the can get a patient into specialized treatment more quickly. Many of these centers are connected to research trials for new therapies, so that in the future, perhaps more sarcoma patients can be cured. Become a member of the SFA so that you can receive up-to-date news on efforts across the country and how you can stay involved.
The sunflower is a symbol specific to raising awareness for sarcoma cancer. Just as pink is prominent during the month of October for Breast Cancer Awareness, today, I hope you will spread this symbol of luck, ambition and opportunity to show support for those affected by Sarcoma Cancer.