Thursday, January 23, 2014

               Becky MacK Goes to Washington

        Every year, in the United States, more than one million people are diagnosed with cancer and every year, more than 500,000 people die of cancer.  That is one big ball of stunning, unbelievable and scary to say the very least.  Those facts shouldn’t just scare you, though; they should catapult you into action.  When I was diagnosed with Medullary thyroid cancer and learned that there was no cure for my disease, suddenly whether or not clinical trials would be funded was important to me.  Suddenly, my priorities consisted of things like making sure that treatments and healthcare would be available when I needed them.  The National Institute of Health, comprehensive cancer centers and new drug developments became my central focus. 
That is why I involved myself with the American Cancer Society Cancer Action Network (ACS CAN).

 ACS CAN works with lawmakers to ensure that cancer is a national priority.  The organization works every single day advocating for public policies in the United States that are helping to put an end to cancer and cancer disparities.    More importantly to me, the organization gives me a loud, powerful and effective voice.  ACS CAN gives me knowledge in the land of cancer legislation keeps me up to date on the latest laws that affect cancer patients across the United States.  ACS CAN gives me options when my cancer tries to take them away.

  On Tuesday, September 10th, 2013, I joined ACS CAN’s staff and volunteers in Washington, D.C.  Together, we covered our capital building in a sea of blue ACS CAN shirts and advocated, educated and told our stories.    A total of 450 volunteers, including 256 cancer survivors attended 463 meetings with lawmakers, demanding that cancer be seen as a national priority.  I was fortunate enough to be a part of this important lobby day and very loudly and proudly represented Florida’s 19th Congressional district.  Together, we asked for lawmakers to consider three things:

First, we asked lawmakers to replace funding for cancer research that was taken away when the sequestration occurred.  Specifically, we asked that funding for the National Institute of Health and the National Cancer Institute to be restored and for continued funding for both cancer prevention and early detection at the Center for Disease Control.  I am living with a type of cancer that does not have a complete, systemic cure and this funding is essential for people like me because we depend heavily on cancer research and clinical trials.  Less funding means less research, less drug development and less hope for my cure.  Less funding means limited access to clinical trials.  Less funding means less lives are saved.  I will not accept that.  It’s time for less cancer and more funding, research and options. 

Second, we asked lawmakers to support legislation that encourages palliative care or quality of life, something that has been proven to decrease healthcare costs and improve the quality and length of life in cancer patients.   When I met with members of Congress, I explained to them that cancer comes with physical pain, nausea, anxiety and emotional distress.  Palliative care involves addressing the needs of the whole patient, not just the disease and, while palliative care does involve things like hospice and end of life care, it doesn’t begin there.  Medical professionals make use of palliative care at the beginning of a patient’s diagnosis and continue with it during treatment.  Every cancer patient has the right to be free of pain and nausea and to have his/her entire self treated.

 I will never forget laying in an MRI scan for over an hour.  I was required to lie completely still the entire time, but all I did was worry and cry.  I knew that the radiologist was looking for tumors and I panicked at the thought.  I couldn’t stay still and as I sobbed, my entire body shook.  Because I was moving so much, we had to repeat the procedure the following week.  This time, the nurse offered to give me something to calm down and rest before the procedure began.  Repeating the procedure unnecessarily cost both me and the hospital more money.  Had someone addressed my emotional needs the first time, it not only would have saved money, it would have helped my anxiety and saved time.  That is palliative care.  Yes, we need to treat the cancer, but we also need to consider every other aspect of a cancer patient’s experience. 

Finally, we requested that Congress increase the federal cigarette tax by 94 cents.  An increase in the federal cigarette tax has been proven to deter youth from smoking and decrease healthcare costs.  I recently learned that for every pack of cigarettes a smoker purchases, it adds $10.47 to the United States economy.  Nothing, and I mean absolutely nothing, good comes from smoking a cigarette or using any type of tobacco product.  

  It isn't just research that is going to help find cures for people like me.  It is also the public policies that allow for the implementation and funding of that research.  Know what’s happening in your community.  Demand that your lawmakers at the local, state and federal levels are paying attention to their constituents, people that are affected by this disease every single day.  Let’s hold them accountable.  I know I will.

2 comments:

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