Eleven busy days … building better tomorrows

At PHA, we’re always busy, but recently, we hit a streak that’s worth writing about. In an 11-day period from Sept. 25 to Oct. 6, PHA hosted nine PHA-managed meetings and activities. Here’s a snapshot of what we’ve been doing.

We started out with the PH Centers of Care meeting that Wednesday. Four committees that have been developing an accreditation system to help improve PH knowledge and quality of care met under the leadership of Dr. Murali Chakinala (University of Washington). It was an exciting meeting as we get close to piloting the system in early 2014.

The next day PHA’s Scientific Leadership Council (SLC) meeting brought together our medical leadership to discuss medical education initiatives, PHA’s research program and medical programming for PHA’s upcoming International PH Conference and Scientific Sessions. SLC meetings take place twice each year. Dr. Richard Channick (Massachusetts General Hospital) chairs the SLC.

The same day about 100 medical professionals traveled to Capitol Hill to meet with their legislators and discuss the Pulmonary Hypertension Research and Diagnosis Act which will bring together various government agencies like the National Institutes of Health, the Centers for Disease Control and the Department of Health and Human Services to meet regularly to coordinate their work and discuss progress on pulmonary hypertension. Many of the medical professionals are planning to take what they learned about lobbying back to their own communities where they will share it with patients and their families.

The SLC meeting led directly into the three-day PH Professional Network Symposium, The Power of Teamwork: 10 Years of Professional Collaboration in PAH. The PH Professional Network (PHPN) is PHA’s membership network for 1,300 nurses, nurse practitioners, physician assistants, pharmacists, respiratory therapists, social workers and other allied healthcare professionals. With educational sessions featuring everything from echo interpretation to exercise right heart catheterization, this year’s Symposium – a major medical conference – celebrated a decade of growth and continued cooperation among PH-treating healthcare professionals. More than 400 medical professionals working in PH attended this meeting which only takes place every two years. 


Lillian Hansen, NP-C, MSN, MS, MEd, (pictured right) and
Franz Rischard, DO, MS, both from the University of
Arizona Medical Center in Tucson, Ariz., present during the
Symposium session entitled Exercise Right Heart Catheterization.

During Symposium, the editorial committee for PHA’s medical journal, Advances in Pulmonary Hypertension, met to begin planning for the future. Dr. Myung Park began her new role as the journal’s medical editor, and she and the editorial team mapped out the next four issues of the quarterly journal. The upcoming topics will be:

• PH and parenchymal lung disease
• Chronic embolic pulmonary hypertension (CTEPH)
• Proceedings of the Fifth World Symposium on Pulmonary Hypertension in Nice, France
• The right ventricle

The journal is mailed to more than 40,000 medical professionals around the globe and is also available online at http://www.PHAOnlineUniv.org/Journal/.

As the PHPN Symposium came to a close, the PHPN executive committee members met to plan their upcoming projects. This group spends a great portion of its time planning the development of educational material for PH patients and their families. One of the executive committee’s most recent projects includes updates to the School Resource Handbook, a tool for PH parents to share with their child’s teacher. The updated version of the Handbook will be available soon on PHA’s website.

These first six meetings and activities wrapped up on Sept. 29, and a new round began on Oct. 1 when the executive directors and their staff from PHA’s three chapters came to PHA headquarters in Silver Spring, Md., for two days of training, conversations with headquarters staff, and 2014 goals and budget planning. Throughout 2013, our chapters – located in the N.Y. Tri-state area, the Midwest and the San Francisco Bay area – have been hosting fundraising and awareness-raising events across the country and laying the groundwork for future growth. You can follow their activities at www.o2breathe.org.

As our chapter staff meetings concluded, PHA’s Corporate Committee meetings began. This committee, comprised of 14 pharmaceutical companies in the PH field, meets with PHA three times a year to discuss how to best support the PH community and our efforts. October’s meeting focused on support for a number of initiatives, including PH advocacy, PH Awareness Month and PHA’s early diagnosis campaign.

Finally, on Oct. 4 through Oct. 5, we hosted a meeting of PHA’s Board of Trustees. This all-volunteer Board meets twice a year, and this meeting focused on a variety of topics, including PHA’s International Conference and Scientific Sessions taking place in Indianapolis, Ind., on June 22-24, 2014.

And if this sounds like a lot, it doesn’t stop there. Throughout this period of time and continuing during October and into PH Awareness Month in November, we have a large number of special events taking place across the country. On Oct. 6, I was able to attend the Baltimore Walk for Hope, which tripled in size from last year. And this past Saturday, Oct. 12, was a big event day for PHA with the Dallas/Fort Worth Walk, the Long Island Walk, the Baltimore Pub Crawl, our first Color PHor a Cure event (watch the video!), and the launch of the PHA Midwest Chapter’s Blue Lips Campaign. I was fortunate to attend the Color PHor a Cure event in little Jennings, La., which drew more than 2,200 registrants.


We celebrated the end of the race with color explosions every five minutes.

We have so much going on, and as November draws near, we will continue to get busier and busier, spreading awareness of pulmonary hypertension and engaging the entire community in our quest for a cure. I invite you to check out our events website to see what’s going on in your area, and I will continue to blog as we go. I hope you will join us on the journey.

Football, Pumpkins and PH Advocacy!

Here’s a guest blog from Katie Kroner, PHA’s Advocacy and Awareness Director. The PHPN Symposium was an important and exciting event – with many other activities built around it – and I look forward to writing more about it after our Board of Trustees and other meetings this week.

Here at PHA headquarters in Maryland, we get just as excited about fantasy football and pumpkin carving as the next person, but nothing says fall at PHA quite like the way we ramp up our face-to-face advocacy efforts.

Lauren Johnson, RN (left), with
Rep. Lois Capps, a sponsor of the
Pulmonary Hypertension
Research and Diagnosis Act.

Last week, more than 400 allied health professionals from across the country traveled to the D.C. area for our 2013 PH Professional Network Symposium, The Power of Teamwork: 10 Years of Professional Collaboration in PAH. To kick off the Symposium, nearly 80 PH Professional Network members visited 60 senators from 30 states and asked them to co-sponsor the Pulmonary Hypertension Research and Diagnosis Act. Advocates received a warm welcome and lots of positive feedback from legislative staff about the new PH bill. In particular, the fact that the new bill doesn’t call for any additional government spending made it something more offices were willing to consider co-sponsoring.

PHPN Advocacy Day was also an empowering experience to participants who had never visited their Members of Congress before. One first-time advocate described the day as “a great way to stand up for patients that I take care of in the hospital setting and to let people know about the disease.”

What’s next for PH advocacy? I’m glad you asked!

PHA’s annual Congressional Luncheon is less than six weeks away on Tuesday, Nov. 12 and you’re invited!

PHA’s Congressional Luncheon & National Advocacy Day
Tuesday, Nov. 12
Cannon House Office Bldg, Room 345 Washington, D.C.
The luncheon is free to attend, and transportation is provided from PHA's office.
RSVP to us by email or by calling 301-565-3004 x753

The Congressional Luncheon is an opportunity to make a powerful impact in Congress, advancing our work for accurate diagnosis and a cure for PH. Even if you can’t attend this free event, I hope you’ll join me in inviting your Members of Congress. Then, share this post with ten friends and ask them to either attend the Luncheon or invite their Members of Congress.

Next week we’ll be posting sample messages on PHA’s website that you can use to invite your senators and representative to the event. Learn more about participating in National PH Advocacy Day.

Stay tuned for Congressional Luncheon updates in PHANews and this blog for more about the PH Professional Network Symposium, the strength of teamwork within the PH community, and the amazing examples of all we can accomplish together.

Dr. Hudak's Delayed Diagnosis Story...

During the past year, PHA has been developing an Early Diagnosis Campaign.  Titled "Sometimes It's PH", the campaign emerged from recent publications showing that over the past 20 years, despite the increased visibility for PH, there has been little if any reduction in the time from onset of symptoms to point of diagnosis.  With 9 FDA-approved treatments available - all over the past 17 years, eight during the past 12 years - earlier diagnosis is an essential pathway to improving patient care and extending life.  Dr. Lynn Brown at the University of Utah leads the campaign and writes a column that circulates quarterly to 40,000 physicians through PHA's medical journal, Advances in Pulmonary Hypertension.  Here is her newest column.  It is the compelling diagnosis story of Dr. Bonnie Hudak, a pulmonologist living with PH... 

Even a Physician with PH Can Be Misdiagnosed

By Lynn Brown, MD, Sometimes It's PH Campaign Chair

Dr. Hudak

Diagnosing PH is often so tricky that even a patient practicing pulmonology can experience delayed diagnosis.  That’s what happened to Bonnie Hudak, MD, a new member of the Sometimes it’s PH early diagnosis campaign’s Education Committee.  

Dr. Hudak is a pediatric pulmonologist at Nemours Children’s Clinic in Jacksonville, Fla., where she often treats asthma and cystic fibrosis but not PH.  Yet her path to diagnosis parallels that of many other PH patients, particularly middle-age women.

Dr. Hudak had long been treated for scleroderma and Reynaud’s disease.  Her rheumatologist knew of the association between PH and scleroderma.  Dr. Hudak maintained a healthy weight, exercising regularly while practicing medicine and raising children.  In her 40s, exercising became more difficult, but with her busy life, she says she paid this little attention. Then while hiking in 2004, Dr. Hudak discovered that at altitude she could not walk uphill.  

In Jacksonville she underwent an echo, an EKG and a chest x-ray.  Her doctor called the results “maybe slightly abnormal.” He was reassured and attributed her symptoms to perimenopause and deconditioning.  He reported that the cardiologist had considered her echo normal. “They were happy with normal, and I was, too,” Dr. Hudak says. 

Still, Saturday morning tennis games left her tired all weekend.  Once, at a neighborhood party, she was chatting with a cardiologist friend.  He told her firmly, “anyone with scleroderma and shortness of breath with exercise has PH unless proven otherwise.”  Two weeks later she was diagnosed by right-heart catheterization and referred to a PH specialty center.

Dr. Hudak’s experience at Mayo Clinic in Jacksonville under the care of Charles Burger, MD, highlights the importance of referral to specialty centers, a key element of the Sometimes it’s PH campaign. In a single day she received comprehensive testing including a more detailed echo which successfully measured tricuspid regurgitation velocity. Those administering these tests pursued results doggedly.  

Dr. Burger also admitted Dr. Hudak to the hospital for a right-heart catheterization that included a vasodilator challenge. Without that thorough procedure and all of the necessary testing, Dr. Hudak’s vasoreactive type of PH would not have been discovered. Dr. Hudak has stayed on nifedipine as her sole PH treatment and has improved from Class III to Class I.  She has also participated in a clinical trial.

In her practice Dr. Hudak now looks for a few more zebras among the horses.  She also looks more carefully at the data used to interpret studies. She would advise other physicians to be more vigilant with a patient who has an underlying condition associated with PH and to work up minimal symptoms that may be due to PH. She also suggests further evaluation if existing results don’t make sense in the clinical setting. 

Dr. Hudak’s experience illustrates that both patients and professionals must be more active in questioning the data and the decisions that drive diagnosis.  Her unique insights will be an asset as PHA works to enhance primary and specialty care professionals’ ability to diagnose and treat PH promptly and correctly.

To find out more about Sometimes it’s PH, visit the SometimesItsPH.org website.

We continue to advance..

This blog was originally posted on August 8, two days after an FDA advisory panel voted their opinion on Riociguat.  It is now updated following the publication of an August 29 New England Journal of Medicine article  and September 2 presentation of new data on Macitentan at the European Society of Cardiology Conference in the Netherlands.  If approved, both drugs may offer additional treatment options for PAH (and Riociguat also for CTEPH). FDA decisions are expected by mid-October.


Tuesday, August 6 was a rare and important day...

A new drug for PAH and CTEPH was being reviewed by the Cardiovascular and Renal Drugs Advisory Committee of the FDA.  This is generally the final step before the FDA releases a decision on whether a drug is approved for release to market.

Thirteen years ago, I attended an FDA Advisory Committee meeting for the first time.  Actually, I attended two on two consecutive days.  The hearings were for what became the second and third drugs to be approved for PAH -  Tracleer and Remodulin.  It was an exciting two days.  The first treatment for PH - Flolan - had been approved in 1996 and five years later we were looking at a tripling of options for patients.

That was only the beginning.  Over the next decade, we would see another tripling...to nine treatments.  And, this week, we were looking at the strong possibility of a tenth.

Other changes, have taken place as well.  Unlike in those early hearings, three of the 11 panelists on the Committee - Drs. Stuart Rich, John Newman and Steven Kawut - are recognized experts i n the field.  Their contributions to the Committee conversation helped the entire panel understand the nuances and needs of this complex area of medicine.

During the public comments section of the meeting, I had the opportunity to read a letter that had been reviewed and approved by leadership of PHA's Scientific Leadership Council and our Board of Trustees.

While PHA NEVER directly recommends the approval of a drug - we believe it is the FDA's role to determine the safety and effectiveness of a treatment - we ALWAYS speak to the need of additional treatments for their individual and combination value to patients.

By 3:00pm following presentations by the new drug's sponsor (Bayer) and the FDA staff and many questions for both and much discussion, the Advisory Committee took their votes.  On the first, they recommended Riociguat's approval for treatment of pulmonary arterial hypertension. On the second they voted to recommend approval for Riociguat as the first treatment for Chronic Thromboembolic Pulmonary Hypertension (CTEPH) for patients who cannot undergo a pulmonary endarterectomy surgery to remove clots in their lungs, or for those who still have complications after having the procedure.

With nine treatments, PAH has as many or more treatments than all but two of the 7,000 rare diseases identified in the U.S.  Now, we will wait for the FDA to make the final decision on a tenth treatment by early October.


Here's a copy of the letter we sent to the FDA and delivered to the Advisory Committee:

August 2, 2013

Kristina A. Toliver, PharmD
Center for Drug Evalulation and Research
Food and Drug Administration
10903 New Hampshire Avenue
WO31-2417
Silver Spring, Maryland 20993-0002

Dear Dr. Toliver:

While there have been great advances in research and expanded treatment options for pulmonary arterial hypertension in recent years, I want to assure you that it is not enough.  Each week, we continue to send an average of 20 condolence cards to families of our members.  We continue to lose too many patients with this disease.  Different treatments work for different patients.

It is up to the FDA to judge the safety and efficacy of riociguat.  However, we at the Pulmonary Hypertension Association want you to know that, should this drug be deemed effective, the need is there for PAH where it will be a valuable addition in the arsenal of therapies. Additionally, for our patients with CTEPH who are not candidates for surgery or have post-operative pulmonary hypertension, we are excited that, if approved, riociguat will be a valuable therapeutic option. 

Sincerely,

Rino Aldrighetti
President and CEO

The Power of Teamwork: the PHPN Symposium

Ten years ago, PHA hosted the first PH Professional Network (PHPN) Symposium.

PHPN was a young group then.  Members were mostly nurses working in the PH field and they wanted to build professionalism in what was then a much smaller field.   They wanted to share their experiences and knowledge and help integrate young medical professionals entering the field more rapidly into a community that could do its best for patients.

So, in 2003 – on very short notice – PHA helped to organize a two day Symposium.  Sixty members attended and were excited about what took place.  Nurses and other medical professionals ran workshops.  I remember a very engaging medical debate in which leading physicians discussed major treatment issues.  And, of course, there was great networking where medical professionals broke down the isolation that still existed then in that smaller field.

The positive reaction led to a second Symposium two years later. Preparations for 2005 had a different feel and reality.  The Symposium moved from an event being done for the medical community to one being created by the medical community.  That made all the difference. A planning committee from PHPN took the reins, listened to their members and implemented.  Attendance grew by 400% to 250.

Each PHPN Symposium since then has continued to grow and add value.  Now the Symposium is a 3 day meeting that opens with an optional training and lobbying activity in Washington, DC.  As members visit Capitol Hill, they not only build their own skills in an area becoming more critical to health care but they are gaining knowledge they can take back home to share with their colleagues and patients.

As PHPN itself has grown to over 1,400 nurses, nurse practitioners, physician assistants, pharmacists, respiratory therapists, social workers and other non-MD medical professionals working in the PH field, new tracks have been added to create value for the broader group of medical professionals who now attend.

The 2013 PH Professional Network Symposium  (September 26-28 in Arlington, VA) remains a unique opportunity to learn from, and with, PH-treating colleagues.   If you are a non-MD medical professional working in this field, you won’t want to miss this upcoming opportunity!

Here a few of the 2013 Symposium Highlights:

·       28 diverse educational sessions featuring new topics, including exercise right heart catheterization, transitioning pediatric patients to adulthood and patient adherence.

·       Optional session tracks for respiratory therapists, pharmacists, social workers, and pediatric professionals.

·       Opportunity to earn up to 10.25 hours of continuing education credit.

·       Daily networking at meet-ups, receptions and in the Exhibit Hall with other PH-treating healthcare professionals from across the country.

·       Latest research presentations in the Poster Hall.

·       A visit to Capitol Hill to advocate for PH patients.

PHA is offering a discounted registration rate of $100 (a $150 savings!) to the first 250 PH-treating healthcare professionals who register for Symposium*. Don't delay — this special reduced pricing is going quickly!  Register now to take advantage of this special rate.

*In order to receive thereduced registration rate, you must have an active PH Professional Networkmembership.

Ripples in the stream...

It's nice when recognition for PHA comes from others who recognize the work this organization does.

It's very special when that recognition comes from our own community.

Recently, I got the following e-mail message with the magic words, "your supporters have spoken"...

This message is brought to you by GreatNonprofits.org

You've won a spot on the 2013 Top-Rated List! Your supporters have spoken, and you've earned a spot on the 2013 Top Rated List! ""Pulmonary Hypertension Association"" is one of the first nonprofits to be honored this year and you are now listed as a winner on our leaderboard here. You'll be featured in our 2013 Holiday Giving Guide and on our 2013 Top-Rated List, distributed to media and corporate foundations.

All of us at PHA appreciated that people had taken - and are taking! - the time to tell Great NonProfits about what PHA has meant to them.

But that wasn't all...  On the same day, Jaclyne Franciscone of LaRue PR wrote to our New York

Chapter executive director, Gina Parziale, to let her know that PHA has been included in the Charity Finds section of People StyleWatch. 

That's a big awareness-builder...with a great fundraising bonus.  People StyleWatch features a shiny gold “mirror” tote bag whose manufacturer, Galian, will donate 20% of proceeds to PHA on bags ordered at Galian.com by Aug. 16.  And, get a discount on the bag, too, by typing in PEOPLESTYLE20 at online checkout. 

So, this blog is not really about the honors, it's about the people who make them, and the awareness of PH they bring, happen.  People like those who initiated the Great NonProfit listing with their stories.  And, people like Jaclyne Franciscone who - when I wrote to say thank you - responded,

Absolutely! I’m thrilled it made it into the issue. Last February, after a three year struggle, I lost my mother to PH. I, along with my sister & dad, would do anything in our reach to help raise awareness for Pulmonary Hypertension. So happy I was able to make a small impact!     

Ripples in the stream.  Each of us makes a choice to act.  Each action makes a difference. 

  

The Bill is in...now it's up to you

Did you know that there is a bill in Congress dedicated to making life better for people with PH? It’s called the Pulmonary Hypertension Research and Diagnosis Act and was introduced by our friends Reps. Kevin Brady (R-TX) and Lois Capps (D-CA). Sen. Bob Casey (D-PA) is working on a Senate version to be introduced this month.

Some of you may be familiar with PH legislation from previous years, but our new bill is completely different. What's important about it in the current legislative environment is that it’s designed to make a big impact without asking the government to spend any new money.

The bill may be new, but its success still depends on you. Take a look at the guest post below from PHA’s Grassroots Campaigns Manager, Elisabeth Williams, to learn more.

PHers Educate Congress on New PH Legislation

Taking a stand together to advocate to Congress about PH is standing together to save a life.
We need more early diagnosis, more education in the medical field, more affordable treatments.”                                                                                                             
                                                                                        --Nicole Cooper, PH patient

This spring, Reps. Kevin Brady (R-TX) and Lois Capps (D-CA) introduced a new bill called the PulmonaryHypertension Research and Diagnosis Act of 2013 (H.R. 2073) in the House of Representatives (H.R. 2073). Since then PHers have been emailing, calling and scheduling visits with their Members of Congress to educate them about how this bill will improve life for those living with pulmonary hypertension.

This budget neutral bill calls for the creation of a committee within the federal government focused on giving people living with PH longer, better lives. The group, including representatives from NIH, the Centers for Disease Control and the Department of Health and Human Services would work together to:

• Advance the full spectrum of PH research from basic science to clinical trials
• Increase early and accurate diagnosis of PH
• Educate medical professionals and the public

So far, these efforts have resulted in several Members of Congress co-sponsoring the bill, including:

Rep. Timothy Bishop (D-NY)

Rep. Jim Costa (D-CA)

Rep. Peter King (R-NY)

Rep. Richard Neal (D-MA)

Del. Eleanor Holmes Norton (D-DC)

Rep. Devin Nunes (R-CA)

Rep. Peter Roskam (R-IL)

 

Stand Together and Advocate!

The success of this bill depends on you! Join other PHers who are standing together to push this bill through Congress. Here’s how:

1)      Contact Your Members of Congress! Educate your own Member of Congress and ask him or her to co-sponsor the newly introduced Pulmonary Hypertension Research and Diagnosis Act of 2013. It’s easy! Simply send an email using PHA’s new online advocacy tool. All you have to do is add your name and zip code and click on Take Action.  That will show you your Member of Congress. Then just take a few minutes to personalize the sample letter with your PH experience. With that brief effort you'll be maki9ng a big difference in helpong your Member of Congress understand the need for more treatments and early diagnosis.  (Oh, and if your Member of Congress is one of those listed above...change the sample letter to just say Thank You for supporting the Bill!)

2)      Sign up for the 435 Campaign! Stand with other PHers who are working to ensure that all 435 Members of Congress support legislation critical to the PH community. We’ll give you the tools to help you easily share your story and make PH more visible in Congress. Email Elisabeth at Advocacy@PHAssociation.org to join the 435 Campaign.

3)      Stay in the know! Stay up-to-date on late-breaking Congressional news and opportunities to advocate for PH legislation. Sign up for PHA’s monthly Advocacy in Action Alert emails