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Advocacy Through the Years
ADVOCACY
Through the Years
ADVOCACY IS MORE THAN VISITING CAPITOL HILL FOR A DAY. For the pulmonary hypertension (PH) community, advocacy can mean raising awareness, sharing experiences, contacting Congress, and supporting and protecting critical legislation. Since the Pulmonary Hypertension Association’s start in 1991, its advocacy efforts have secured essential funding, put patients and caregivers face-to-face with lawmakers and resulted in the first PH law. PHA couldn’t have accomplished all that it has without people with PH, caregivers and health care professionals. In this story, three PH advocates share their experiences and how their efforts have made a difference.
Emily Stibbs, then 14, and her father, Jack Stibbs, ask Congress for PH research funding in 2006.
JACK STIBBS
HIGHLANDS, NORTH CAROLINA
In 1997, our daughter Emily was diagnosed with idiopathic primary PH. She was 5 years old. We could barely pronounce the words, much less figure out whether it was a lung or heart disease. After she was given three years to live, we had to find out everything we could about PH research and take action. We adopted the motto: Knowledge is power.
BIPARTISAN COOPERATION When our family was living in the Houston, Texas, area, we were fortunate to have a friend in Congress, Rep. Kevin Brady, R-Texas, who knew of our plight and vowed to help us. He began to build support for a PH-related bill in the House of Representatives, the Pulmonary Hypertension Act of 2001. [See story, Page 12].
Brady contacted Rep. Tom Lantos, D-Calif., whose granddaughter had PH. Together, they worked their sides of the aisle and convinced half the House to co-sponsor their bill. It felt like we finally had some people of influence taking up the cause and bringing the issues of a rare disease to the forefront.
Emily testified in front of a congressional committee in 2006 when she was 14. She asked for funding for PH research. Brady and our lobbyists thought it would be most effective to hear from a young patient. And they were right. The committee members had a very lively exchange with her.
Unfortunately, the Pulmonary Hypertension Act didn’t pass, but it increased PH awareness and PHA’s with the lawmakers and regulatory officials.
Today, our daughter Emily is 29, happily married and living in Austin.
COLLEEN CONNOR
WEST CHESTER, PENNSYLVANIA
My first experience in PH advocacy was PHA’s 2009 congressional luncheon. I was diagnosed in November 2007, and my PH had progressed rapidly. It was difficult to be suddenly debilitated in my late 30s with two young children.
I was interested in understanding how I could help PHA, so I reached out to Katie Kroner, now PHA’s vice president of advocacy and patient engagement. Katie offered to set up meetings so I could share my story before and after the luncheon. I also asked my employer’s lobbyists for help securing meetings with my members of Congress.
I was excited, committed and nervous about meeting my senators. Traveling to Washington, D.C., would be difficult, but my family and I packed a suitcase of large oxygen tanks, a cooler of dry ice for my Flolan, and my IV medicine and supplies.
SHARING MY STORY Staffers from both senators’ offices were kind and welcoming. I shared my diagnosis story and spoke about the lack of convenient therapies and needed research. Then a PHA representative gave an overview of legislation proposed to fund PH research.
Later that day, Sen. Bob Casey, D-Penn., agreed to sponsor the bill. He became the first senator to co-sponsor a PH bill. He has remained committed to supporting PHA and has kept in touch with me.
I invited my PH specialist Darren Taichman, M.D., to attend my meeting with Sen. Arlen Spector, R-Penn., While
Colleen Connor makes advocacy a family affair. Above: Sen. Bob Casey (right) with Colleen’s husband Shawn, son Ryan and daughter Keira in 2013. Below: The Connor family gather for Easter 2021.
Spector didn’t support the legislation, he said he understood the need for research funding and would continue to increase funding for general disease research at the National Institutes of Health (NIH).
Since then, I have written to my congressional representatives and arranged meetings in Philadelphia with legislative assistants from the office of Sen. Pat Toomey, R-Penn., and Dr. Taichman. I also participate in PHA’s Advocacy Action Network.
We advocate on issues critical to our community, such as increased NIH funding for PH research, or restricting insurance companies from overriding your physician’s orders and dictating new or transition therapies.
Every month, it seems there is an opportunity to lend your voice to a cause important to all of us. Through advocacy we can impact legislation and ultimately our quality of life and outcomes. Lend your voice, because when we stand together, we are strong, and we are heard.
This page: Joanne Sperando asks a House of Representatives committee in 2008 to increase National Institutes of Health funding for PH research. Opposite: Joanne Sperando (third from left) with former Rep. Peter King (center) in his district office in Massapequa, New York.
JOANNE SPERANDO
NORTH BABYLON, NEW YORK
My 23-year ‘PH-versary’ was this summer. The time has gone by so quickly, and I’m grateful beyond words. My PH story is a familial one.
My mom’s sister was diagnosed with PH at 23 in 1963 and died very quickly. The family forgot the words “pulmonary hypertension” but found them again in 1995 when my brother John became seriously ill and couldn’t get a diagnosis for months. We pulled my aunt’s records from 1963, and that’s when the doctors put it together and told us that we had familial PH.
I was diagnosed three years after my brother in 1998. We formed the first support group in the area the
following year with lots of help from PHA. Bringing patients together was a very rewarding experience, and it was gratifying to see patients meet other patients for the first time.
SPEAKING UP FOR THE COMMUNITY My first experience in testifying about PH was in August 2001 when I appeared before the Food and Drug Administration to talk about a drug trial I participated in for subcutaneous Remodulin. I conveyed how PH affected me and my experience with the medication. It was a positive interaction, and I realized quickly that I was giving a voice to the PH patient community.
In 2006, I was asked to speak to the New York Department of Health’s Pharmacy and Therapeutics Committee and advocate for Medicaid coverage for another PH medication I was taking.
The more often I spoke, the more comfortable I became talking about the needs and wishes of the PH community. In March 2008, PHA asked me to ask the House LaborHHS-Education Appropriations Subcommittee for additional NIH funds for PH research. I also thanked them for addressing a backlog of Social Security Disability Insurance applications.
I was one of many speakers asking the subcommittee to take action on behalf of the patient community. As I sat there, listening to all the other patient speakers, I realized that we were all essentially asking for the same thing: to be heard, to be understood, to be recognized and to be supported in our efforts to save our own lives and the lives of everyone affected by illness, especially rare illness.
AWARENESS AND EDUCATION That August, my family, my support group co-leader Mary Barlett, N.P., and another family visited Rep. Peter King, R-N.Y., in his district office. We asked him to co-sponsor a bill to raise PH awareness and create an education campaign. We told him our story, and he agreed on the spot.
I told my story again at PHA’s 2013 congressional luncheon in Washington, D.C., using pictures to illustrate my family’s journey with PH.
I lost my brother John in 2015. He battled PH for 20 years, fighting so hard the whole time. I have concluded that telling a really good story, even a sad one, can raise awareness and educate.
It empowers patients, gives a voice to our community and raises our profile. I encourage everyone in the PH community to give it a try. Together, our voices will be heard.
