Awareness Month: Voices from the PH Community (#7)...

Last Tuesday, November 13, we had our annual Congressional Luncheon.   It is always held on Capitol Hill and this year was in the Dirsksen Senate Office Building.  I particularly liked that because Senator Dirksen, who was a Republican from Illinois, was one of those large personalities who defined the greatness of American politics for me as I was growing up.

One of my favorite quotes from Senate Minority Leader Dirksen - one that should be well remembered by politicians today - was...

I am a man of fixed and unbending principles, the first of which is to be flexible at all times.

We were pleased to have about 100 Congressional staffers and PHA members attend the event.  Carl Hicks emceed and introduced a number of speakers, including Senator Bob Casey of Pennsylvania (who has championed the Tom Lantos PH Research and Education Act in the Senate) and Dr. Gary Gibbons, the new Director of the National Heart Lung and Blood Institute.  Both spoke knowledgeably about our work and Dr. Gibbons remarked on PHA's long and productive partnership with his Institute.  Dr. John Berger, a pediatric PH specialist at Childrens National Medical Center in Washington, DC, discussed issues related to PH, most notably speaking to the complexity that the FDA has introduced into the field as they dealt with the request for a pediatric indication for sildenafil, an issue PHA's Scientific Leadership Council also recently addressed.

But most of all, we heard Diane Ramirez, who has advocated for a better life for all those living with PH  throughout her home state of North Carolina (and beyond), tell her own moving and powerful story of living with PH.  Thank you Diane and thank you Alex Filipse for filming Diane so that it can be shared below.



After Diane spoke, patients and family members from 12 states headed out to talk to our Senators and their staffs.  Here's a picture of part of the group of 20 who visited Maryland Senators Mikulski and Cardin.

This is number 6 in an Awareness Month series on the Empowered by Hope blog.

You can make a difference, too!

World PH Day…a first among many

As a community grows, it develops traditions and opportunities.

The First World PH Day – celebrated on May 5, 2012 – offered both of those.  As patient and medical leaders from five continents gathered in Madrid, Spain for the Scientific Session and Celebration, I couldn’t help but think of how far we’ve come in so few years.

The first patient with PH was diagnosed just over 120 years ago, in 1891, by Dr. Ernst von Romberg, a German physician and clinical scientist. 

Sixty years later – in 1951 – after identifying just over 30 cases in the U.S., Dr. David Dresdale gave the disease its name. 

Ninety years later – in 1981 – the National Institutes of Health began a five year registry which enrolled 187 patients across the U.S., providing the first clear picture of the disease.

In January of 1991, 100 years after Dr. Romberg made the first identification of a PH case and forty years after Dr. Dresdale named it, four women sat around a kitchen table in Florida. Three were patients, one was a caregiver and two were also medical professionals (nurses).  Their coming together set in motion the beginning of a PH community and acceleration for change.  Their action led to the first PH association in the world.  Today, there are 58 such national associations throughout the globe.

Five years after PHA was founded, the first disease-specific treatment for PH was approved by the FDA.  Today, there are nine treatments – as many or more than all but two of the 7,000 rare diseases identified in the U.S.  PH association networks are flourishing in Europe  and Latin America.  Asia and North America are active and the South African PH association is a beacon in Africa.

It was great to celebrate with Juan Fuertes and Irene Delgado (who conceived of, organized, fundraised for and inspired the First World PH Day for which we again thank the Spanish PH association, ANHP.  It was an honor to be with leaders like Noriko Murakami who built PHA Japan Cecilia Martinez Ramirez who founded HAP Mexico, Denneys Niemandt, who one by one, told the stories of the 25 patients diagnosed in South Africa, Yvetta and Peter Makovnikova, developers of a Slovakian PH association, Dr. Majdi Idrees, president of the Saudi Association for Pulmonary Hypertension SAPH, Enrique Carazo Minguez, president of the other Spanish association, FCHP, Gerry Fischer, founder of PHA Austria and president of PHA Europe and that network’s vice president Pisana Ferrari who also leads the Italian association, AIPI.  Many others were there including globally recognized PH physicians, such as Drs. Galie, Rubin, and Simmeneau.

There will be many future World PH Days but the traditions began with this one and I have no doubt the opportunities will continue to emerge.  But, as always, we are driven by the stories.  Here’s one to close this blog.  It is a reminder for me why we do what we do... 

A woman came up to me at the World PH Day celebration and said, “I have to thank you.”  When I asked her why, she said that she had been diagnosed before there was a Spanish association and continued, “I came to the PHA website to learn about the disease and how it affected the lives of others like me. Actually, I have to thank you twice.”  When I asked why again, she said, “When I came to PHA's site I didn’t know how to read English.  The information was so important to me that I forced myself to learn to read the language from the site.” 

I regret that I have forgotten her name but I will never forget what she taught me about the importance of the work that we all do.