Sarcoma Awareness Month needs your help

By Suzie Siegel

Once again, we need your help to get Congress or the White House to recognize July as Sarcoma Awareness Month.

Many of us had never heard of sarcoma before our diagnosis. Our first doctor may have seen few, if any, cases. We may have felt alone, with no idea about the resources available to patients and their families.

Increased awareness could help patients get a correct diagnosis and better treatment and support earlier.

July may seem far away, especially for those still digging out from winter, but we need to start contacting Congress and the White House now.

Here's how to contact the White House: https://www.whitehouse.gov/get-involved/write-or-call/. Here's how to find your Senator: https://www.senate.gov/general/contact_information/senators_cfm.cfm. If you don't know who your U.S. House Representative is, put your zip code into the box on the top righthand corner of this page: https://www.house.gov/representatives.

Please keep all communication positive. Remember that we need bipartisan support. If you can't talk directly with your Representative or Senator, you may want to call their offices to see if they have a staff member who handles health issues. After talking to someone, follow up with an email or letter. Check back with them periodically to see if a decision has been made. Visit them in person if possible.

Get your friends in on the fun. Put this on Facebook, Instagram, etc. Talk to your bridge club or your religious institution. Be creative.

Here are facts to mention:

• Sarcoma nonprofits decided at a meeting in 2007 to support July as Sarcoma Awareness Month. We don't know anyone opposed to this. 
• The National Cancer Institute, the American Cancer Society, the American Association for Cancer Research, the American Society of Clinical Oncology, the Sarcoma Alliance for Research through Collaboration and the Connective Tissue Oncology Society recognize July as Sarcoma Awareness Month. But no one in Congress or the White House has chosen to make this official ... yet!
• Sarcoma is one of the major types of cancer. Although it represents only 1% of adult cancer cases, it is 20% of childhood cancers. 
• Sarcomas occur in connective and supportive tissues, including bone, muscle, fat, nerves, etc., anywhere in the body. There may be more than 200 subtypes. People of all ages can get sarcoma, including babies in the womb. Lifestyle choices, such as smoking and drinking, have not been linked to sarcoma.
• The American Cancer Society estimates 13,040 cases of soft-tissue sarcoma will be diagnosed this year, with 5,150 Americans expected to die from it. For bone sarcomas, the figures are 3,450 new cases and 1,590 deaths.

The movement to designate a special time for sarcoma awareness started in 2001 with the late Suzanne Leider, founder of the Sarcoma Alliance. She proposed a Sarcoma Awareness Week in June. Its sister organization, the Sarcoma Foundation of America, adopted that, as did Sarcoma-UK and other nonprofits and sarcoma centers. Then Bruce Shriver, founder of the Liddy Shriver Sarcoma Initiative, decided to have an International Sarcoma Awareness Week in July.

In 2006, I wondered why we couldn't all agree on the same time period. Bruce didn't want to change his week in July. So, the Sarcoma Alliance and others switched to July for the sake of unity. Sarcoma nonprofits agreed on July at the Connective Tissue Oncology Society (CTOS) meeting in Seattle in 2007.

I created a Care2 petition on the topic. A legislative liaison at Moffitt Cancer Center in Tampa helped me draft the wording for a House resolution, and U.S. Rep. Kathy Castor, D-FL, sponsored it 2011.

The former Republican leadership of the House wanted no more resolutions recognizing days, weeks, months, etc. I talked with the leadership’s staff to no avail. The result was we couldn’t get Rep. Castor’s resolution out of committee.

I was a journalist before being diagnosed with leiomyosarcoma. In 2012, I wrote an editorial for my former newspaper, the Tampa Tribune. The next year, I wrote this. In 2015, I wrote another editorial and created a White House petition. The Sarcoma Foundation of America took over the petition in 2016 and 2017.

At the CTOS meeting this November, sarcoma advocates decided to consider collaborating on the effort to gain federal recognition of Sarcoma Awareness Month. The National Leiomyosarcoma Foundation has partnered with Rare Disease Legislative Advocates.

Of course, the Sarcoma Alliance and Sarcoma Foundation of America will work hard on this issue once again -- with your help! Please tell us who you've contacted in comments on this blog post or on the Sarcoma Alliance Facebook page: https://www.facebook.com/groups/sarcomaalliance/