Tuesday, May 27, 2014

Around the world in 30 days ... and still going!

As I write this note, three weeks and three days from PHA’s 2014 International PH Conference and Scientific Sessions, I find myself thinking about what Conference years were and what they are now.

It used to be that in even-numbered years (Conference years), volunteers and staff were completely re-directed to manage the thousands of details that make for a successful Conference.

That was then. Today is different.

We are working on so many essential projects beyond Conference that the good of the community requires us to strive for excellence in all.

Here is a snapshot of the 30 days (April 27 to May 26) before I wrote this blog. I hope it will give you a picture of what is being done to accelerate the fight against PH.

PHA opened this 30-day period with news that we had received another four-star rating by Charity Navigator. This is the eleventh time PHA has been rated by the largest online nonprofit reviewer and the eleventh four-star rating they have given this organization. They tell us less that 1 percent of the thousands of charities they rate have received this honor.

As many of you know, one of our goals at PHA is to weave together patients, families and medical professionals across the globe to make sure no good idea is kept in shadows. That concept of cooperation and collaboration has led to the growth of national PH associations with 68 functioning today, up from three in 2000. On May 14, in the context of World PH Day, I blogged about our weeklong trip to Muscat, Oman, and Beijing, China (April 29 – May 6). During that same time, we participated in a Latin America-wide conference of PH leaders. These trips are about much more than visits. They are about strengthening global unity in the fight against PH. For example, one day before the Oman/China trip, we had an April 27 international conference call to agree on the creation of a website that will help PH association leaders more easily find and use resources from all of the PH associations … bringing us one step closer to universally shared best practices for the acceleration of the movement’s growth. This call was an outgrowth of two years of meetings that also resulted in the creation of coordinated PH anxiety and depression studies in Asia, Europe and the U.S.

While I was working with our Chinese PH partners, marking World PH Day on May 5, there was tremendous activity in North America. PHA continues to manage the World PH Day website, which we created last year. Thanks to our friends at PHA Canada, Niagara Falls was lit purple on May 5 in recognition of World PH Day, as were the Peace bridge between Buffalo, New York, and Fort Erie, Ontario, and the CN Tower in Toronto (among other notable sites). In the U.S., besides a number of events, we continued to focus on building PHA’s media blitz, which I blogged about on April 30.

PHA’s media campaign continued to grow rapidly throughout May, with Queen Latifah, Michael Buble, Florence Henderson, (see May 2 entries about Lucas), Laura Dern, Courtney Cox and Diane Ladd helping to get the word out. Reports kept coming in all month about networks playing our public service announcements (PSAs), including in prime time on American Idol. New networks (both English and Spanish) were added to the list agreeing to play our PSAs. Our web pages training those in our community on how to maximize local air play are being visited heavily … as are the web pages for those who are becoming aware of PH by seeing the PSAs on TV or hearing them on the radio.

We spent May refining our formula for success in getting TV and radio play. According to the Benton Foundation, there are 1,744 full-power TV stations in the U.S. Adding low-power and UHF and VHF commercial stations, the number grows to 5,720. There are 14,728 full-power radio stations in the U.S. This month, we had our PSAs sent to the inbox of 4,000 TV stations and the 10,000 most popular radio stations. Through a few easy-to-make phone calls, you can make sure those PSAs are opened by the stations and played. We have never had an opportunity for awareness like this before and, as always, success depends on you and those you can help recruit. You are our only chance to reach in to the community where you live!

On May 8, three of us met PHA co-founders (and sisters) Judy Simpson and Pat Paton at the National Organization for Rare Disorders Gala in Washington, D.C. Pat and Judy (pictured left) were being honored as part of NORD’s Portraits of Courage program. Actelion and Bayer had been selected by NORD for their Innovative Orphan Products Award, with Pat Paton making the presentation to Bayer and me to Actelion.

On May 14, we filled the room at the FDA/PAH patient meeting at FDA headquarters in White Oak, Md. It was a great discussion with the goal of including patient input in the FDA decision-making process. Meetings for only 16 diseases have been scheduled despite requests from hundreds of disease organizations. We feel fortunate to have been able to help make this meeting take place. The webcast of the hearing has already been posted from the FDA PAH Public Hearing page in Part 1 and Part 2.

As we move closer to the launch of PHA’s PH Care Centers accreditation program, the pace of review and final development is accelerating. During the week of May 12, we had four PHCC Committee meetings to discuss the six pilot accreditations that have recently taken place, make necessary adjustments and prepare for the upcoming launch. Much education about the program has already taken place and more is coming.

Between May 16 and 20 – with several other staff – I was at the American Thoracic Society meeting in San Diego. This is the annual meeting attended by more than 16, 000 pulmonologists. When I attended my first ATS meeting in 1999, there was very little about PH … two sessions with attendance at one being 35, the other 50. Now it is one of the most discussed issues at the Conference, with thousands participating in PH sessions.

While at ATS, we had the opportunity to host a three-hour question-and-answer session for patients and their families. Drs. Ron Oudiz, Nick Kim, Jeff Sager and Nurse Practitioner Wendy Hill delivered a great interactive program. PHA’s exhibit was heavily visited with a great deal of interest in both our medical journal – Advances in Pulmonary Hypertension – and the new PH Care Centers accreditation program. Each of us had a number of other responsibilities at the Conference. With PHA's Michael Gray and Briana Rivas-Morello involved in a number of medical committee meetings (Briana also had primary responsibility for the patient question-and-answer program). PHA's Jessica Armstrong held committee meetings and developed new connections for our Early Diagnosis Campaign. She returned with several endorsements and several more pending. Debbie Castro’s schedule was filled as the newly elected Chair-elect of ATS’ Patient Advisory Roundtable (PAR). In two years when she becomes PAR Chair, Debbie will have a seat on the ATS Board. Dr. John Newman, a former PHA Scientific Leadership Council Chair, received the ATS Educator Award. Dr. Val McLaughlin, our current Board Chair received the PAR Award for Excellence – the second time in two years that it has been presented to a PH physician. (Dr. Mike McGoon received the award last year.)

Also, while at the American Thoracic Conference, we learned that we are ATS’ largest research partner … larger than industry or other nonprofits. This speaks to our goal of and success at leveraging our donor’s research support to bring in additional money to support PH research.

There’s something else special about the ATS Conference. Coming as it does every second year a month before PHA’s Conference, it is a time when we are usually discussing options for our Conference’s room blocks, remaining scholarship availability and many other issues. This year was no exception but, fortunately, did not distract too badly from my various meetings with funders, physicians and nonprofit partners. It is a place where we get to connect the dots to accelerate our forward motion.

So, that is a sketch of the past 30 days through one PHA staffer’s experiences. It doesn’t include those of our other employees and volunteers both in the national office and in our Chapter offices. It doesn’t include the glue that keeps our structure together and well governed, monthly meetings with PHA’s executive committee and finance committee, among others. It doesn’t include the time invested by staff and volunteers in support groups, the development and management of our research programs, our advocacy activities, patient and medical education, the creation of a new feedback system related to specialty pharmacies … and a great deal more.

We are truly a busy organization. For those who understand the importance of what we do, for those who can handle the pace, we wouldn’t have it any other way.

Wednesday, May 14, 2014

World PH Day: Pieces of a Brilliant Mosaic

As I've watched it grow and evolve over the past 16 years, I've come to see it as a beautiful mosaic. The power of that beauty flows from people who unite around the common cause of fighting this disease.

First, in 1991, four women sat around a kitchen table in Florida in the United States. Their desire to ease the isolation of living with a disease that was both rare and without treatments drove them to form the first pulmonary hypertension organization in the world, the Pulmonary Hypertension Association.

In 1996, patient associations were organized in France and Germany. 

In 2000, at PHA's International PH Conference in Chicago, we realized that people from other nations had actually come. When we invited them to meet with PHA's Board of Trustees, seven people joined us to begin a conversation that has never stopped. By 2001, PHA-UK and PHA Israel had formed.

When we had a more intentional meeting at our 2002 International Conference, 80 people came. When we asked them what they wanted from us, the message was clear.: PHA has been around longer. Help us to learn. Help us to build.

More national organizations were formed, and by the 2004 Conference, we had staffed a position to help increase communication and collaboration among the patient organizations. We also shared a simple principle that has been adopted by all PH associations: to succeed, we have to stand together – not just patients, not just caregivers, not just researchers, not just medical professionals... but ALL of us.

So now, as we prepare for PHA's 2014 International PH Conference, it remains the same. It has always been equal parts patients, family members and medical professionals. It has always been and will always be homecoming for the PH community

It has also become something more. It is the International Conference and Scientific Sessions. It is the International Conference and Global Leaders Symposium. More than 30 nations are expected to have a presence.

They are part of a global movement that today includes 68 national PH associations.

When our friends in Spain proposed World PH Day three years ago, we were glad to help. Since the Second World PH Day last year, we created and have managed a website for all the associations to share and coordinate activities.

We are also often invited to participate in other World PH Day activities.

This year Julia, who coordinates our international activities, and I were the guests of the Saudi Association for Pulmonary Hypertension. We boarded the plane on April 29 for a 13-hour flight to Muscat, Oman. For seven years, this group of physicians has led the Joint Pulmonary Hypertension Association Assembly of the Eastern Mediterranean Region. As she has with other national organizations, Julia has worked with PHA staff to make our patient and other materials available for translation by SAPH. Last year, she helped organize a call between U.S. and Saudi patients. 

Our visit was a great opportunity for us to meet physicians from throughout the Middle East and share information and discuss possible partnerships. One important conversation is likely to lead to a patient component for the next conference. When we helped Dr. Nick Hill organize a patients component for his medical Symposium at Tufts in Boston more than 10 years ago, we saw that concept spread rapidly to other PH meetings throughout the U.S.  Today it is the rule, not the exception. Our hope is that if Dr. Majdy Idrees and his SAPH leadership group are successful, the concept will spread throughout the region.

After three days on the ground in Muscat, Oman (a beautiful city by the Indian Ocean), it was time to hit the airport. Julia headed back to Washington, D.C., and I headed to a different gate for a nine-hour flight to Beijing, China. (I'm writing this as I wait for a lift to the airport for my trip home.)

ISEEK, the patients’ group in China has been working hard to meet needs in their nation. I had been invited to come to their first Conference. They had brought together more than 150 patients, family members and doctors with government officials to discuss the importance of creating drug availability for PH patients. I was brought in to discuss the multi-part U.S. insurance system (private insurance, Medicare, Medicaid, the Affordable Care Act, pharmaceutical support programs and so on). While there, I had a chance to renew acquaintances with Dr. Cheng, who I had met seven years ago during my last trip. Huan Huang, a young woman who was transplanted two years ago and is now the Director at ISEEK, presented on patient depression issues. It was striking to see the similarities and differences from our own and PHA Europe's depression and anxiety study to this Chinese study.

Following the meeting, about 30 doctors held an open meeting, with press attending, where they discussed positive ways to achieve the same thing every patient group in the world is after: a better life for patients as we continue the march toward a cure. It was good to see the doctors and patient leaders working so well together.

I spent most of the next day with the ISEEK staff. Their executive director, Rong Li, formerly a filmmaker, has built the organization quickly in a country now beginning to accept the value of nonprofits. They remind me so much of PHA's days of early staff history. They have moved four times in the past three years of their existence. Their staff has grown to six. They hire for the same values we do: bright people with commitment to cause and an ability to work well in teams. And they have a refusal to fail.

While Julia and I were traveling, Briana was in Medellin, Colombia, where PHA had been invited to present at the Sociedad Latina de HipertensiĆ³n Pulmonar (Latin Society of PH) an umbrella organization similar in structure to PHA Europe. Briana's report will come in a future guest blog.

So, as I wait for my ride to Beijing airport for the long ride home, I continue to catch up with the regular daily and sometimes hourly updates about PHA's World PH Day project, which has generated celebrity interest on Twitter and continues to expand TV and radio play for our public service announcements.

Every day another piece of the mosaic falls into place. Every day we move another step closer to our goal.

It was wonderful to spend time with this enthusiastic and inquisitive group. I know we will hear a lot from them in coming years.