Rare Disease Day

As you all already know the last day of the month of February is rare diseases day. Wait, no you didn't. I’m willing to bet that not one of you out there reading this knew that. Do you know that July is sarcoma awareness month? Or that pediatric cancer awareness month comes the month before pink october? No to both? I’m not surprised because one year ago…Neither did I.

As you already know I was diagnosed with a very rare form of bone cancer named Ewing’s Sarcoma. Over the past several months I have learned a lot about sarcoma, and pediatric cancer. Here are some statistics that I’d like to share with you. They may surprise you. I know I was shocked, and upset when I read some of these facts because my assumptions about these diseases were completely wrong.

Sarcoma Facts 

• There are over 50 types of sarcoma 
• At any one time there are approximately 50,000 people struggling with the disease. 
• Each year there are 14,000 people diagnosed with sarcoma, and 6,000 die from the disease making it one of the most aggressive cancers. 
• 1% of adult cancer diagnosis are sarcoma, and 20% of pediatric cancer diagnosis are sarcoma(mainly Rhabdomyosarcoma, Ewing’s Sarcoma, and Osteosarcoma).
• With early detection and aggressive treatment these cancers can be cured in 60-70% of patients, but a lot of the time sarcoma goes misdiagnosed for months
• Since 1995, there has been over 50 new drugs approved for the treatment of cancer by the FDA, but only one of those drugs is for the treatment of sarcoma. 
• The survival data over the last 20 years has been very stagnant 
• New methods of treatment are needed to increase patient survival rates. 

Sarcoma is extremely underfunded. How much? In dollar terms, the National Cancer Institute’s funding for sarcoma research is $38.9 million while funding for prostate cancer research is $265.1 million, and breast cancer is $602.7 million. I was unable to find specific funding numbers from the American Cancer Society website on sarcoma, but I did find that they only gives 2.96% of the money they raise for research to pediatric cancer, and 12%, and 7% to breast, and prostate cancer respectively. Sarcoma is likely to be much less than even 2.96% unfortunately. Why is the funding so little? National Cancer Institute, and American Cancer Society response: “Because it is rare.” My response to that: “That is not good enough of an excuse.” Soon you will see why.

Sarcoma’s nickname of “The Forgotten Cancer” is well deserved from the figures above. That’s a pretty large gap in funding isn’t it? It’s not even close. Two types of cancer with a much higher survival rate, and more advanced treatment get exponentially more funding than over 50 types of cancer put together. Seems pretty reasonable….NOT! 

Every year there are 250-300 people diagnosed with Ewing’s sarcoma. Let me explain to you something I have thought about every day since my diagnosis.

I don’t know how many cases of Ewing’s Sarcoma were made in 2013, but for the sake of simplicity let’s pretend that its an even 300. I have thought of these other 299 people as my class. With current treatment for Ewing’s sarcoma I’ll show you how many of us will make it to graduation while also giving you some information about the disease. At diagnosis 75% of us will have localized disease, with the remainder having metastatic(spread) disease. Typically all of us have at least microscopic spreading though. This is because this cancer has an 80-90% recurrence rate when only treated with surgery. It must be treated with systemic chemotherapy to kill the microscopic spreading along with surgery and/or radiation. All 300 of us have the same first line treatment. I’m lucky to be part of the 225 people with localized cancer. We have around a 70-75% chance of beating the disease, while the people with metastatic disease at diagnosis have less than a 30% of being cured. So when it comes graduation time only 190 of us will be there to celebrate. The 190 of us that make it will not be finished though. The treatment for this disease is very harsh, and aggressive, which leaves us at a much higher risk for late side effects from treatment such as infertility, organ damage, and secondary cancers. This is unacceptable because most of us are just kids when we’re diagnosed, and will live for a long time if we survive. These risks, and the fact that only 2 out of 3 of us will survive the cancer are exactly why treatment needs to improve. The average years of life lost from those 110 people is 62. 62 years! The average years of life lost from someone who dies from all types of cancer is 15 years. Remind me why we’re not getting any funding again? Is it because our disease is rare or is it because you’d rather give some old person 15 extra years of life who has already experienced most of what life has to offer at the expense of us who haven't. I hope its not the latter.

Just because our disease is rare doesn’t mean that we don’t exist. It’s true that Ewing’s sarcoma is a very rare cancer, but we are also a part of a much larger group of people. The 300 of us diagnosed in 2013 are a part of the 50,000 people currently fighting various types of sarcoma. And those 50,000 people are a part of an even larger group of people. People fighting rare diseases. Doesn’t sound too rare now does it?

If you would like to donate money to sarcoma or pediatric cancer I suggest donating to these organizations below. These organizations donate all of their funds towards sarcoma, and pediatric cancer unlike other organizations.

• http://www.curesarcoma.org
• http://miles2give.org
• http://www.stbaldricks.org
• https://shop.stjude.org/GiftCatalog/donation.do?cID=14262&pID=24671
• http://www.alexslemonade.org
• http://sarcomahelp.org

I wish all 300 of us could survive the cancer, but until there is change it will never happen. Survival rates will remain stagnant until we get more funding. More funding creates more clinical trials which eventually leads to new drug approvals, and thus improved treatment, and survival rates.  Small nonprofit organizations cannot do it on their own. There is too much of a gap in funding. Until that day comes we must donate to these small organizations, and get the word out about these “rare” diseases to create awareness.

Please share this post. It’s all that I ask of you to do. The word needs to get out.

Sources

• http://www.cancer.gov/researchandfunding/snapshots/
• http://sarcomaalliance.org/what-you-need-to-know/
• http://curechildhoodcancer.ning.com/page/childhood-cancer-1
• http://www.uptodate.com/contents/treatment-of-the-ewing-sarcoma-family-of-tumors
• http://www.onclive.com/web-exclusives/Pazopanib-Receives-FDA-Approval-for-Treatment-of-Soft-Tissue-Sarcoma
• http://childhoodcancer-mccaul.house.gov/issue/all/related-news?page=1