Is Your Healthcare Professional Coming to Capitol Hill?

This week’s guest blogger is PHA’s Senior Director of Advocacy and Awareness, Katie Kroner. Katie started working on our PH Professional Network (PHPN) Advocacy Day in 2007 when she had recently begun at PHA as an Advocacy Associate. She makes a strong case for the importance of the PHPN Advocacy Day as an integral part of the PHPN Symposium educational and networking event. PHA works hard to keep costs very low for the Symposium (and free for the Advocacy Day) because we know that education, networking and action lead to better and longer lives for patients. If you’re an NP, PA, RN, RRT, social worker or other medical specialist working in the PH field, consider coming to Advocacy Day and the Symposium this September. If you are a patient, please make sure your medical staff is aware of this opportunity.

PHPN Symposium attendees pose with
Rep. Lois Capps (D-CA) during Advocacy Day 2013.

Are the PH nurses, social workers, respiratory therapists or other allied health professionals in your life registered for the PH Professional Network Advocacy Day on Sept. 17?

If not, they should be. I’ll tell you why, and I hope you’ll share this information with them.

Let me start with the bigger picture. This fall, from Sept. 17-19, PHA will host the PH Professional Network Symposium in Arlington, Va. Symposium is an educational and networking opportunity for allied health professionals who want to learn more about caring for those with pulmonary hypertension. Previous participants have described it as life changing, and many leave with new strategies, ideas and support to make sure the PH patients they see get the best medical care possible.

But wait. There’s more.

Symposium participants can check a box on their registration form to sign up for a FREE advocacy day on Capitol Hill on Thursday, Sept. 17.

When it comes to PH advocacy and the Pulmonary Hypertension Research and Diagnosis Act of 2015, health professionals have a unique and valuable perspective. They can tell not one story about the impact of PH, but hundreds. They can also speak about the importance of National Institutes of Health (NIH) funding for PH research and the work their institution is doing in that area.

One participant described her choice to register for PHPN Advocacy Day this way: It is important for us to support our patients in any way possible. Many are not able to make this trip and it is imperative that we get more knowledge about PAH to the community.

Another said, I’m a nurse! I advocate for my patients every chance I get!

PHA provides training, lunch and transportation between the Symposium hotel and Capitol Hill. Advocates are placed into groups based on their congressional district and accompanied by a PHA staff person or experienced advocate.

PHA knows that when health professionals come to Capitol Hill to speak out on behalf of their patients, Members of Congress listen.

That’s why we do everything we can to make Advocacy Day an easy, fun opportunity. Is your health professional registered? www.PHAssociation.org/Symposium

P.S. Advocacy day participants who want to get a sneak peek at the day can register now for a PHA Online University webinar that answers questions ranging from, “What should I say?” to “What should I wear?”

Join PHA for a Rare Opportunity … A Conversation with FDA

This is a guest blog by Katie Kroner, PHA’s Director of Advocacy and Awareness. Katie is working to fill the room (and the Internet) with PAH patients for a unique meeting at the FDA White Oak, Maryland, campus. PAH has been selected from thousands of diseases to be one of 16 to talk about what patients want from the FDA approval process. Now all we have to do is show up to be heard. It is truly a rare opportunity. If you haven't registered yet, do so now. If you have registered and are willing to speak on a panel, make sure you send an outline of your comments to FDA. You should have received an email from FDA with the details.

We count on the U.S. Food and Drug Administration (FDA) to ensure that the medications we buy are safe.

FDA is also responsible for making sure that drugs do what the company selling them says they will do and that each new drug does something at least a little different from previous ones. In other words, that those drugs are effective and offer new options.

Every drug comes with some risks. How does FDA decide that a drug is safe and effective enough to be sold? In the past, they’ve based these decisions on specific, measurable criteria such as improving performance on the six-minute-walk test.

What they haven’t done much of is talk with people who will actually be taking the drugs they approve. In fact, some disease communities have had to protest in front of the FDA building just to get a meeting.

That’s what makes the May 13 meeting between FDA and the PAH community so unique. FDA has decided to make some changes in how they measure safety and effectiveness, and this time they are asking patients for advice. When they announced their new program, they got requests for meetings from hundreds of groups. Rino wrote comments, and PHA Board Member Colleen Brunetti traveled to DC to present to the FDA. In the end, FDA decided to start small, they will meet with 16 disease communities over the next three years, and the PAH community is one of them.

That meeting will take place on Tuesday, May 13, and it’s important that you take part. The room holds 250 and the Internet holds a whole lot more. I invite you to come in person if you can, but if you can’t make the trip, you can still respond to poll questions and submit comments online.

We know from FDA’s meetings with other disease communities that the conversation will be informal. After kick-off comments from a few pre-selected panelists, anyone in the room who is living with PAH and the parents of children with the disease will be invited to speak to questions like: 

• What symptoms of PAH most impact your daily life?
• Are there activities that are important to you that you can’t do the way you would like because of your PAH?
• What do you do to treat your PAH?
• Are there downsides to your treatments? How do these impact your life?

Those who participate online can respond to similar questions via poll. 

It’s about time a federal agency is asking PAH patients these important questions. PHA has worked hard to secure this meeting. Now it’s your turn to make your voice heard.

• Register with FDA. Whether you are attending in person or by webcast, you must register on FDA’s website. All members of the PH community are welcome, but PAH patients and the parents of young patients will do the talking.
• Claim your seat on the bus. For those who would prefer not to drive to the FDA campus, buses are available from pick up points in New York, Philadelphia and Maryland. Complete this form to claim your seat on the bus

Busy day in Greater Washington...

Today was supposed to be a big ice storm in Washington DC...but the temperature held above freezing because we had a lot going on outside the office.

At an 8:00am breakfast in Bethesda, Maryland I had a chance to introduce Candice Abate, our new VP for Medical Services & Patient Education to PHA Board Chair, Laura D'Anna.  Laura was in town for an NIH meeting.

After that, I headed up the road to Congressman Chris Van Hollen's office in Rockville.

He is our local Member of Congress and PHA volunteer Conchita Watson had written him a letter during November Awareness Month telling him she wanted to talk to him about PH...and received an invitation in response.  The rest of our group was her friend and fellow patient, Georgia M., PHA's Advocacy and Awareness Director, Katie Kroner, our Washington rep, Gavin Lindberg and me.  It was a great meeting with Conchita and Georgia telling our Congressman what it is like to live with PH.  He was very interested in learning about the disease and we were able to give him a lot of information.   Our big issue was the reintroduction of our bill in the House and Senate (Katie and Gavin have been working with Senator Casey and Rep. Brady and others on that).  After we spoke, he told us he had read the bill and was glad to co-sponsor and would help to move it along! We will be following with his staff on that and another issue.

While that was going on, Debbie and Dr. Steve Mathai from Johns Hopkins were across the District line to do their interview on the show I blogged about yeasterday.  I was able to listen to the Kojo Nnamdi Show...and you can, too!  Once you click the link to the show's page, drag the white time line on the black bar to 24:33 to catch the start of the segment.

They were a great team, joined by Dr. Gregory Kato from NIH.  Many thanks for helping to expand awareness of this disease. 

...And what a relief we didn't have to cancel all this for ice!