Making Noise About PH

I speak and write a lot about the power of community.  It's what makes advances in so many directions possible in the fight against PH. 

On Friday, Margaret Beardsworth, who works on insurance issues here at PHA came in with some great news.  A partnership of patients, family members and medical professionals that began 3 years ago has been making steady advances in working with the Social Security Administration (SSA) to understand the special issues of PH patients, especially as it relates to diability issues.  Friday's victory comes out of the work of a team of physicians that has been working with the Institute of Medicine under contract to SSA.  The impact is expected to be very large for PH patients.

Here's what Margaret wrote today in her guest blog...

“YAHOO!!!!!” That was Alan Harder’s response Friday when PHA received an official report from the Institute of Medicine (IOM) committee that outlines a set of recommendations for the Social Security Administration (SSA) to use in updating their Cardiovascular (CV) Listing of Impairments.


Alan is a former SSA employee and PH caregiver. Like many others in the PH community, Alan has been working for three years to guide the SSA in the process of updating the PH-related language in their Listing of Impairments - the list of disease states that adjudicators use to determine if an applicant qualifies for Social Security Disability (SSD).


Friday’s report is a detailed set of recommendations that touches on the broad spectrum of cardiovascular disease states. It contains an entire section dedicated to PH, with language mirroring, almost word for word, the recommendations that PHA provided the IOM. You can learn more about the recommendation process from one of Rino’s past blog entries.


If 328 page report is a little heavy, you can read the report introduction instead - a 4 page PDF that gives an overview of the IOM’s work and mentions pulmonary hypertension twice.


What does this mean? We are one step closer to streamlining the SSD application process for PH patients by updating the language used to determine if a PH applicant is disabled. The Social Security Administration is still a long way from releasing completely updated cardiovascular listings, but the PH community is heading in the right direction!


A big reason PH is receiving so much attention in this process is because of the united efforts between the Scientific Leadership Council’s physicians, PH community members and activists and the government. A special thank you to all who have volunteered their time and expertise on this initiative, including Drs. Ronald Oudiz (Harbor UCLA), Robyn Barst (Columbia University emeriti), Harrison Farber (Boston U.), Vallerie McLaughlin (U. of Michigan), Gregory Elliot (University of Utah), Adaani Frost (Baylor), Michael McGoon (Mayo), Nickolas Hill (Tufts), Erika Rosenzweig (Columbia), Charles Burger (Mayo) as well as Carol Vreim, Alan Harder, Gavin Lindberg, and Jennifer Jaff.


Making noise about a rare disease like PH can be challenging, but we’ll continue to push forward, one step at a time, each time making a bigger difference.

Swimming the mighty Mississippi River...

All of us at PHA have been following PH patient Lil Long's preparations to swim the Mississippi River in memory of her friend Nicky Roberts and to build PH awareness.  The story is compelling.


Today, we got great news from Actelion that they will provide PHA with a film crew to cover the September 11 event, presenting the magnitude of the achievement and help us also use it as a platform to create a video that will offer a platform to talk about PH and exercise.  The film crew will be Glenn and Glenn Productions, the folks who did such a great job procucing our 2010 Conference Video.

Jess McKearin, who leads our special Events team, sent me a passage from Lil's journal in which she talks about her recent test swim.  I think it's well worth reading.

It broke my goggles; it tore my snorkel away from my mouth. My nose clip nearly drowned me because I couldn’t get enough air. In other words everything I thought had prepared me for over a year was useless. My heart was pounding I guess as hard a heart can pound. I swam in circles for fifteen minutes from being so disoriented I didn’t know up from down. That current is a powerful force to be reckoned with.



When I finally figured out what all I was doing wrong, I grabbed the boat (I was swimming with no life jacket or tether) and had to rethink everything I had learned.


First of all, you CANNOT keep your head under water and swim the river, thus the disorientation. Second, you have to spend money on a very good pair of goggles. You cannot do completely without them because my left eye where my goggles broke is almost swollen shut with sand! Third, keep your eyes on the prize, the other side! Fourth, if you ever get a little over halfway across, the current starts to help you instead of hinder you. It will begin to push toward the other side. And, most of all, fifth, stay calm! It’s hard to breathe when your heart in beating 90 miles an hour!


When I figured all of this out, I finally started getting somewhere. If I hadn’t spent that time going in circles, I probably could have made it three fourths across a very swollen river.


Next time I’ll be calmer. It didn’t help any that right before I went in the water the Cap’m and a media guest saw a four foot alligator gar! I really did NOT want to hear that.


When I got to the middle, I paused to look around. I absolutely could not believe that I was in the middle of that great river of ours. It gave me hope and I felt Nicky all around me. I was completely awestruck.

To see Lil speak about her test swim, click here.

She's been building  a lot of awareness through TV (the clip below talks about a swim date earlier than what is now a September 11 planned date)...

New name, same great program...

A number of years ago, I heard a story that instantly helped me understand the importance of PHA's Patient to Patient Helpline.

One night, a young woman called 800-748-7274.  She was with her father in the parking lot of her doctor's office.  They had just left the doctor's office where she had been given a diagnosis: pulmonary hypertension.  The doctor told her she had a year to live and gave her a PHA brochure. Devastated, she called the Helpline number listed there. 

The volunteer who picked up the phone was Dorothy Olson.  After listening to the young woman's story, Dorothy said,                   
                 It's not over.  I have been living with this disease for over 25 years.

...and everything changed.

Today, Debbie Castro, PHA's Director of Volunteer Services, asked our staff to start circulating some important news.

Here it is...

PHA’s Patient-to-Patient Support Line is a new name for one of our very first patient services. Formerly known as the “Helpline,” we’ve renamed it to highlight one of the biggest benefits of this service: immediate connection with another patient. Our Support Line volunteers also provide information, like the contact point of a nearby PH clinician or support group, but we really want patients and caregivers to know that a PHriend is always a phone call away.

800-748-7274

Need to talk to another patient about anything and there’s no support group nearby or the next meeting is several weeks away? Are you a caregiver that needs information and support? No internet access to our Discussion Boards or online chats? No problem—you can always dial our Support Line to talk to another patient right away.

Spirit that drives us forward...

I write a lot about the patients and family members and medical professionals who drive our common cause forward. Today, I'd like to write a few words about our PHA staff...



Early on, our hiring values evolved to include commitment to cause, a demonstrated ability to work in teams and folks who are as bright as we can find them. One of the things I've always appreciated about our staff is their ability and willingness to collapse around a problem and solve it.


Recently, two staff at the supervisory level and one program associate left PHA for personal circumstances that gave us shorter than usual time to prepare. Unfortunately, all three were in the same work area, so it put a lot of pressure on our remaining medical services team.


Not only have various staff been jumping in to fill the gaps but they have been doing so with gusto!

In a great show of spirit, they printed up badges in the picture you see, carrying the message

Medical Services

Special Forces

The Few - The Proud

So, helping Rachel Wheat and Meghan Finney, are Doreen Lucadamo, Amanda Butts, Meghan Tammaro, Suzanne Flood, Carsten Hailey, Patti Lalley, Patty Hunt, Patty Scuderi and Jessica Ritter As the badge says, they and their peers are the Few and the Proud! And we're proud of them and all the good folks here who are doing so much to change the history of this disease.


Many thanks.

Life has many paths...

Roham Zamanian is a bright and energetic young physician who I've known for the past several years.  When Dr. Ramona Doyle left the Vera Moulton Wall PH Center at Stanford University, Dr. Zamanian was the natural choice to lead the Center's Adult Pulmonary Hypertension Clinical Service.

Today, I got to know Roham in a different way...through his extraordinary life's journey 

From our PH community, I have learned that heroes are defined by the way they handle what life puts in front of them. Roham's quiet and clear sharing of his important story is heroic in my view.

When I asked his permission to share it with you, he wrote back:

I feel that I have arrived at a moment of clarity in my life – that I have found the purpose – and working in the PAH community is just what I was meant for. I’ll be honored for you to share my story.

93 medical education meetings..and more

In early August, I traveled to Cheyenne, Wyoming.

Dr. Dave Badesch, a Professor of Medicine at the University of Colorado was presenting a PHA medical education session for physicians and allied health professionals.  A leader in the field, Dr. Badesch is also in charge of the highly regarded PH Center at the U. of Colorado and has been a past Chair of PHA's Scientific Leadership Council.  He is one of the early group of physicians who began building PH research and clinical practice more than two decades ago.

The program Dr. Badesch was delivering is one of 30 being presented this year by expert PH physicians in smaller cities throughout the U.S.  Chaired by Darren Taichman, M.D., Ph.D. from the University of Pennsylvania, the 30-City program is connecting expert physicians with less experienced PH physicians in ways that will provide increased knowledge, earlier diagnosis and better treatment for PH patients.

It is one of three PHA initiated face-to-face medical education programs - PHA's Preceptorship and On-Demand programs being the other two - that will this year provide medical education in pulmonary arterial hypertension through over 90 sessions (up from 40 last year and 6 per year between 2005 and 2007). That's 90 education sessions in a disease state with between 20,000 and 30,000 diagnosed patients.

Such intensive medical education in a relatively small field is possible for several reasons.  First, PHA is blessed to have two active and engaged medical sections, one with 500 physicians, the other with 850 nurses and other allied healt professionals.  Through the interest and commitment of these medical leaders, PHA has a pool of expert educators willing to step forward and further develop this important new field of medicine. Second, our industry sponsors - Actelion and Gilead at the Platinum level and United Therapeutics and Pfizer at the Silver level - understand that co-sponsored medical education brings greater credibility to the content, with a greater sense of ownership and engagement by the participating medical educators. 

We believe this model of delivering medical education provides a win-win for everyone...most importantly the patients who are living with pulmonary hypertension.

A strange world...

In 2001, Alicia Mundy wrote Dispensing with the Truth.  It is the story of the battle over fen-phen, the drug combination that was ultimately withdrawn from the market because some patients who were taking it developed heart and lung damage, most notably pulmonary hypertension.

Many of PHA's members and some of our board members became PH patients after taking fen-phen.  Indeed, Alicia Mundy's book opens with the story of Mary Linnen, the daughter of former PHA board member Tom Linnen and his wife, Mary Jo.  As the liner notes describe Mary, she was "a healthy young woman...who took the drugs for only twenty-three days to lose weight before her wedding, and then died in the arms of her fiance a few months later".

I've been thinking a lot recently of Mary and Tom and Mary Jo and others like Candi who lost their health or their lives or family members to PH developed through fen-phen (Pondamin and Redux).

On July 13, the New York Times reported under the headline F.D.A. Review of Diet Pill Relieves Investors that the drug Qnexa had received a positive staff review of it's safety and effectiveness.  The maker's shares immediately soared 15% while two competing drugs soon due for FDA review went up 9% and 21 %. 

I understand that weight loss is the holy grail of American life but I - and all of us who are part of the PH community - have seen the collateral damage.  Qnexa contains the amphetamine phentermine -- one half the ingredients of the fen-phen combination.  The makers would say, it's the safe half. 

Maybe.

On June 15, the New York Times carried a second report that the FDA panel of expert advisors reviewing the drug on June 14 had voted 10 to 6 to recommend against approval of the drug based on safety concerns.

Now the FDA has a choice.  We'll see what they do.