Congressional Visit Yields PH Research Act Co-sponsor!

L to R: PH patient Conchita Watson, Rep. Chris Van Hollen (D-MD), PH patient Georgia Milosevic, PHA President Rino Aldrighetti, Katie Kroner, PHA Director of Advocacy and Awareness, and Gavin Lindberg, PHA’s representative on Capitol Hill. L to R: PH patient Conchita Watson, Rep. Chris Van Hollen (D-MD),
PH patient Georgia Milosevic, PHA President Rino Aldrighetti, Katie Kroner,
PHA Director of Advocacy and Awareness, and Gavin Lindberg,
PHA’s representative on Capitol Hill. As a result of this meeting,
Rep. Van Hollen became an original co-sponsor of the bill.

In February, PH patients Conchita Watson and Georgia Milosevic visited Rep. Chris Van Hollen’s (D-MD) district office in Rockville, Md., to encourage Rep. Van Hollen to co-sponsor the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011.

Conchita first met with a member of Rep. Van Hollen’s staff last November after PHA’s Congressional Luncheon on Capitol Hill. In that conversation, she spoke about how the PH Research and Education Act would save the lives of PH patients. “The entire time, the staff member listened and was very attentive,” Conchita recounts.

After the Congressional Luncheon, Conchita immediately sent the staff member a letter thanking him for his time, reminding Rep. Van Hollen to co-sponsor the bill and offering herself as a resource for any PH-related questions. In reply, she received an invitation to visit Rep. Van Hollen’s district office to speak directly with him about the PH Research and Education Act.

At the meeting, Georgia and Conchita shared their PH journeys. “All of my doctors were too busy to help me,” Georgia explained to Rep. Van Hollen. “It wasn’t until I saw one of the young medical residents that I got my PH diagnosis.” Georgia emphasized that her journey toward a diagnosis was long, frustrating and not uncommon for many PH patients. In the couple of years it took for her doctors to properly diagnose her, Georgia went through bouts of depression and also wound up in the hospital two times because her doctors kept ignoring critical PH symptoms.

Conchita admits that she was a little nervous about the visit initially, but after she and Georgia shared their stories, Conchita knew they had made an impact. “I had a feeling … that he [Rep. Van Hollen] was going to do something about the bill. I could see that Georgia’s story really had an effect on him.”

Georgia says, “I can’t really emphasize enough how nice Van Hollen’s staff was to us. They took us into his office and really listened to us.” Shortly after their visit, Rep. Van Hollen officially co-sponsored the Tom Lantos Pulmonary Hypertension Research and Education Act of 2011. A visit from a constituent is the number one reason a senator or representative will co-sponsor our bill. Congratulations to both Conchita and Georgia! We’re one co-sponsor closer to a cure!

 

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.