Storming Capitol Hill: LLS Leads the Charge for Cures and Access

DECLARE IT! Cancer ends with me.

Blood cancers are the #3 leading causes of cancer death in the United States – right behind #1 cancers of the respiratory system (including lung cancer), and #2 cancers of the digestive system (including colorectal cancer), according to the American Cancer Society. Breast cancer is #4.

Since the Leukemia & Lymphoma Society (LLS) was formed, it has invested more than $1 billion in blood cancer research and is motivated to ensure patient access to these innovative therapies. What many people are not aware of is that blood cancer research is a gateway to cures for other cancers. Multi-drug chemotherapy and stem cell transplantation began as blood cancer therapies. Almost half of all cancer drugs newly approved by the US Food & Drug Administration (FDA) in the past dozen years were first approved for blood cancers.

LLS is a leader in a unique approach to research and fundraising. The non-profit forms partnerships with biotechnology and pharmaceutical companies, the National Institutes of Health, universities, and medical centers to discover innovative medical therapies and to move them to market.

I am proud to be an LLS patient advocate. Last week over 500 LLS patient advocates from all around the country stormed Capitol Hill lobbying for two health care bills (HR 460 the Patients’ Access to Treatments Act and S 1365/HR 2827 the Medicare Part D Beneficiary Appeals Fairness Act) to improve access to innovative therapies for patients. These bills address Medicare and private commercial insurance plans. The bill that was passed in Arizona addressed individual insurance plans and small group insurance. Both U.S. Congress bills when passed will make “specialty tier” drugs affordable.

We went through training workshops and formed teams to deliver a message to our legislators in the U.S. Congress. My team consisted of LLS staff, Board members, leukemia physician, patient (me). NOTE: I will be posting more about these wonderful team members in my next blog.

We met with the offices of two senators and five representatives:

(1) Rep. Kyrsten Sinema (Arizona District 9) (D)

(2) Sen. Jeff Flake (R)

(3) Rep. Ann Kirkpatrick (D)

(4) Office of Sen. John McCain (R)

(5) Office of Rep. Paul Gosar (R)

(6) Office of Raul Grijalva (D)

(7) Office of Rep. Trent Franks (R)

Another Arizona team met with several other representatives.

We did not even get pushback from the insurance companies when they realized that passing the bills would increase premium costs about $3 more per year. Not having access to these drugs would mean additional hospitalization costs, etc.

To say that these two bills are personal is an understatement. They directly affect my particular situation. If I do not have access after the clinical trial, I will not be able to afford the cost. The cancer will progress.

I will keep a very close watch on the voting of these bills.