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March, 2007
Piedmont, N.C. PH Support Group Meets with Their Senator about PH
by Cindy Pickles, PH patient and 435 Campaign member
Cindy Pickles, Karen Parker, Senator Richard
Burr, Diane Ramirez, and Tonya Robertson |
The call came Friday. It was the appointment scheduler for Senator Richard Burr. The Senator had an opening for Monday March 12 if our group was still interested in a meeting. The PH Research Act, the initial reason for requesting a visit six months ago, was inactive, but we could not let a chance to enlighten Senator Burr regarding pulmonary hypertension slip away.
Four patients from the Piedmont PH Support Group, Tonya Robertson, Karen Parker, Diane Ramirez and Cindy Pickles along with Claudia Baker, R.N., Director of the Accredo Health office in Greensboro met with Senator Burr in his Winston-Salem, N.C. office.
The meeting was awesome. As we waited for Senator Burr to finish his previous appointment, he came through the door to the waiting area and introduced himself to each one shaking our hand. It was surprising that a staff member did not just come and usher us to his office.
Senator Burr suggested that we all sit around the table as he pulled up enough chairs for everyone. This made for a relaxing atmosphere. When you spoke it felt like the Senator was listening. He even assisted in setting up a laptop so that we could share a CD-ROM about PH with him.
Tonya Robertson, Senator Burr
and Claudia Baker, Director of
Accredo Health at the
Greensboro, N.C. branch |
After Senator Burr gained a basic understanding of PH from the eight minute video, “Understanding Pulmonary Hypertension,” we had an opportunity for discussion. Discussion points included the PH Research Act and the five FDA approved drugs with pro and cons of each. This included mixing the IV drugs, wearing a pump, needing a central line, carrying extra meds, pump and supplies in case of pump failure, plus one drug’s requirement to be kept cold, inhalation drugs, the time for treatment and cleaning of equipment each time. We also discussed the high cost of PH drugs, maxing out on health care benefits, educational need of the medical community, the need for PH awareness, PH misdiagnosis, the number of PH patients in the U.S. and specifically in NC which is over 500.
At the end of our meeting, Senator Burr promised to forward the video and PH brochure to his medical staff advisor. If the Senator is in town September 29, 2007 he will try to attend the 2007 NC Cure PH Golf Tournament.
It is so important for us to keep our Members of Congress informed with what is happening regarding pulmonary hypertension. They are the ones we elected to represent our interest in the government process. They need this information in order to make informed decisions when considering how to vote on legislative bills. Our Senators and Representative control the laws and funding for so much that touches each of our lives--health care, research, drug availability and cost, social security, Medicare… The list goes on and on. Those with pulmonary hypertension cannot afford not to be part of the process. |
