Breast Cancer Patient Education Act Passes into Law

Breast Cancer Patient Education Act Passes into Law

Today, December 18, 2015, the Breast Cancer Patient Education Act was passed into law by Congress. It is truly difficult for me to contain my enthusiasm. This bill will work to educate and inform other women about their breast reconstruction options after mastectomy.  They will have the same advantage that I did at the time of a breast cancer diagnosis. I was fortunate that I was told about my reconstruction options by my skilled breast surgeon, Dr. Michele Ley, the day of my diagnosis. I soon came to find out through research and talking to many women that they were not given this information. They did not know about the options available to them to rebuild their body, restore their confidence and move on with life after hearing they had breast cancer or carried the BRCA gene mutation.

It has been exactly one year since I returned from my breast reconstruction DIEP flap surgery, phase 1. It is the compassion and commitment from my ASPS board certified microsurgeon, Dr. Minas Chrysopoulo and his surgical team at PRMA that I have been inspired to become a patient advocate. This group is truly engaged in shared decision making with their patients about breast reconstruction options and respects all choices. There have been times when the hope of passing this bill seemed unreachable. But, as Dr. C told me once, “We are the outliers. We have a mission and we must continue to educate and inform others.”

And so, along with my friend and colleague, Alene Nitzky, we opened a Hoot Suite account and on May 10, 2015, stormed Social Media with this blog that I wrote to Secretary Sylvia Burwell. I began tracking the bill on govtrack.us and posted it on my web page so that others could do the same. I called my local representative, called Washington directly and wrote yet another blog on September 8, 2015 with language that was a bit more poignant with personal messages to members of Congress. Each voice matters, small as mine was, and so I continued to track this bill.

I read the statistics about how few bills that are introduced are actually passed into law but giving up was not an option. Apparently, ASPS did not feel any differently than I did. With passion, their commitment to patients, and their grassroots advocacy they went to work. In the words of ASPS president Dr. David Song:

According to Song, the Breast Cancer Patient Education Act is ultimately about “getting the best information in the hands of women and their families to empower them in making the best choice for their care. In recent years, we have gained a deeper appreciation for the fact that cancer treatment leaves not just physical scars, but also psychological, spiritual and emotional scars. Reconstruction can play a role in treating those non-physical forms of pain, and all members of the cancer team have an obligation to, at a minimum, make sure that their patients understand their treatment options. Anything less is unacceptable. That is why ASPS worked so hard to pass this legislation and why we are so happy to see it become law.”

I could see that this bill was gaining momentum as more and more supporters signed on. I received an email just this month showing that there were 32 cosponsors, 20 Democrats and 12 Republicans. I knew things were moving along but had no idea it was set to pass today until my phone started lighting up with the good news.

I check what is trending on Twitter each morning. Today it was #StarWars, #R2D2, #MotherTeresaSainthood, #2015In5Words. It was not the passing into law of The Breast Cancer Patient Education Act. But, for the 230,000 women who will be diagnosed with breast cancer this year and next, this is and should be trending, #BCPEA. This is epic news and I support ASPS in thanking the members of Congress who supported and helped pass this bill into law.

Our work is only beginning. Education is power. Let’s work to put the power of choice into the hands of women affected by breast cancer so that informed decision making can work to rebuild lives, no matter what the choice!

Trending on Twitter:  #BCPEA Passes into Law!

Carol Bush BS RN CHPN

Palliative Care Nurse Activist | Community Impact Strategist | #CrazyMemaw

9 年

Terri-- Celebrating right along with you!! Thank you so much for your passion and advocacy --- making sure the patient voices are front and center. Happy New Year!

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