June 2008

We’ve Moving!

Short blog tonight; tomorrow is moving day. We are just moving locally, to a new office space to keep costs down on escalating rents. We’ve found a larger space in the CVS building in Georgetown, where we will be surrounded by professionals and nicer surroundings. All other contact information will stay the same: only our street address has changed to 65 Central Street.

I am putting together PEN this week and discovered a wonderful monthly newsletter that I think everyone should get and read: the COTT Washington Update. This is a document that speaks to me intelligently, about things that I don’t necessarily write about, so it makes for a nice compliment to our reading. You can check it out at www.cott1.org.

Our systems may be down for a day or two, but we will try to get back up and running as soon as possible; thanks for your patience!

Great Book I Read: Man’s Search for Meaning by Viktor Frankl.
This is one of those books you read and never forget. It is cited by many leaders, authors, therapists and life coaches. Frankl was a young psychiatrist when captured by the Nazis and sent to a concentration camp. The first half of the book describes life in the camp, and how differently people learned to cope with the unforgiving environment. He learns invaluable lessons amidst the pain and suffering and writes,

“The experiences of camp life show that man does have a choice of action. We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread. They may have been few in number, but they offer sufficient proof that everything can be taken from a man but one thing: the last of the human freedoms–to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

Frankl’s ideas were also rooted in the beliefs of the ancient Stoics and as well as modern day existentialists. His basic tenet is that anyone can, even under such horrific circumstances, decide what he will think and feel, mentally and spiritually, and how he will behave. Attitude is choice, and our attitudes can help us survive, or die. He chose to give meaning to his suffering; his young bride died at the camp, and though devastated, but he did not let this loss consume him. It is up to us to give meaning to our lives, including our suffering. Frankl went on to found a new school of psychology called logotherapy. This is focused more on the present and future, rather than on the past. It recognizes that bad things happen, and then, helps patients find meaning in the pain to live more full lives. If you’ve read about the Elizabeth Smart case in People magazine last week, you’ll know exactly what Frankl is talking about. Read Man’s Search for Meaning. It gives hope that you can cope with just about anything and come out stronger. Four stars.

The Future of Plasma Products

This past week I attended a fascinating event: The Plasma Protein Therapeutics Association (PPTA) in Washington DC. The PPTA is a nonprofit organization whose mission is “to promote the availability of and access to safe and effective plasma protein therapeutics for all patients in the world.” Attending were representatives and the heads of the major plasma producers in the world, including Baxter, Grifols, Octapharma, Talecris and CSL Behring. With only about 300 people present, it provided a more detailed and intimate look at issues affecting plasma.

The theme was “Access to Care.” Larry Guiheen, President of Biopharmaceuticals, Baxter, and also chair of the PPTA Board, kicked off the meeting with an overall look at the state of the world: Access means different things in different countries, he said, referring to the poor versus the rich countries. Health care goals of all countries include improving the overall quality of care, and providing access to care. Healthcare should be viewed as an investment in poorer countries (or what manufacturers call emerging markets); it’s expensive at first but someday it will pay off. What therapies will a government support? Those with the highest impact–meaning, I think, that lower cost drugs will allow governments to buy the more drugs, allowing for expanded treatment for all citizens. And plasma products generally are lower cost than recombinant ones. He added, the key to access is reimbursement of care.

Larry continued by saying, in the US, plasma is a key ingredient to health care. The US is an exporter of plasma, where self-sufficiency [in creating its own plasma] is key, but sometimes a country actually limits care. He pointed out that one limitation are trade barriers, which need to be broken down. China used to have barriers to importing plasma. Overall, he concluded, global plasma production capacity is increasing, plants are expanding, and collection centers are expanded.

Mark Skinner, president of the World Federation of Hemophilia, gave a wonderful presentation on the work of the WFH: there are now 115 national member organizations (NMOs). There are 219,000 patients with bleeding disorders identified.

I gave a presentation on my visit to Zimbabwe in December, to contrast the difference in access to care issues in a country with no hematologist and economic collapse, to a country with excellent care but increasing access hurdles, the US. I also gave my presentation on the Current Storm, which in a nutshell outlines the changing landscape of the hemophilia industry under the tightening screws of payer reimbursement restrictions.

A lively panel discussion with executive representation from the plasma manufacturers (and one lawyer to prevent any violation of antitrust laws) ensued on the last day of the conference. The panel came alive at the mention of paid versus voluntary donors. Wolfgang Marguerre, chairman of Octapharma, a Swiss-based factor manufacturer which has just recently set up shop in the US, warned about shortages of supply: if there is an indication or new product for multiple sclerosis treatment that uses plasma products, there will not be enough plasma for the US population.
We need more volunteer donors, he stressed. “We have to use our influences to get them to understand our message,” he strongly pointed out. “The time has come to end ideological warfare against these types of donations.

Mark Skinner noted that the World Health Organization (WHO) allows only voluntary donations, and this is not sufficient to meet world demands. He asked, how can we reconcile WHO policies and the needs of our population?

Marguerre added, “There is confusion about [the role of] transfusion. [Authorities believe] Plasma is special and needs to be voluntary.”

Jan Bult, president of the PPTA, then asked the board their opinions of self-sufficiency, the ability of a country to produce its own plasma for its own people. I was shocked to learn that only the US and Germany are capable of doing this! In large part, because the US pays its donors, something that is considered forbidden, unethical and dangerous in many countries, and by some groups here in the US.

Dr. Gregor Shultz, chairman of the board of Biotest, pointed out that Japan had been trying for 20-30 years to create self-sufficiency and still can’t do it. Self-sufficiency won’t work there. Larry Guiheen added, “We pay donors, and other countries must too if they want to be self-sufficient.”

Japan became a focus of the discussion, and I learned that in Japan, the Minister of Health could be held personally liable if something goes wrong with blood supply. And the HIV scandal still haunts Japan, which then affects their regulatory department. The Japanese government can restrict imports of blood products when demand for these products hurts domestic production. And the government prefers blood products from Japanese blood. Blood is also labeled “voluntary” or “involuntary” yet no compensation is given.

Obviously, plasma production and supply was viewed from a marketing point of view: restricted markets mean the manufacturers cannot sell their products there. As a businesswoman, I enjoyed the presentations and discussions immensely and learned a great deal about the plasma business. As a humanitarian, I appreciated perhaps more than anyone present the positive impact plasma products have on the patients with hemophilia in the developing world. They are the future of care for so many countries, and we need these products. I feel that the US is one of the engines, if not the engine, that drives the hemophilia industrial world. We need out manufacturers to continue to produce plasma products, and keep the incentives that motivate them to product it, for choice, access to care, and for our brothers in the developing world.

Congratulations to Jan, Julie Birkofer and the entire PPTA staff who hosted this engaging, interesting and stimulating conference. I look forward to attending next year!

(Photos: Jan Bult opening PPTA meeting; Wolgang Marguerre of Octapharma; Mark Skinner of WFH; Kerry Fatula, director of West Penn. Chapter of NHF with CSL Behring representatives; Laurie and Jan Bult)

The Passing of a Giant

It is with great sadness that I report on the passing of Jonathan Wadleigh, who deserves to be called a legend in the bleeding disorders community. Jonathan died at age 62 of liver cancer June 4. He helped found and was the first president of the Committee of Ten Thousand (COTT), an advocacy group for those with hemophilia who were infected with HIV. His passion to seek justice and inform others to be vigilant about the nation’s blood supply helped win compensation for everyone infected with HIV from clotting factor, and helped strengthen blood safety practices and law.

From an article in the Boston Globe:

“Normal people don’t think about when they’re going to die,” Jonathan Wadleigh said in a Globe interview 13 years ago, and his was not a normal life.

Born with hemophilia, he spent part of his childhood in a wheelchair or on crutches as internal bleeding turned his young joints arthritic. He took his first steps toward years of activism by hobbling door to door on crutches to register voters.

As an adult, Mr. Wadleigh learned that some blood products he had used to help his blood clot in an ordinary fashion were contaminated, infecting him with HIV and hepatitis C. This time, he focused his activism on those with hemophilia whose lives would be shorted by AIDS. He was the lead plaintiff in a class action lawsuit that, after winding its way through the courts, resulted in a $670 million settlement from four drug companies that manufactured the blood products.

“He helped make the blood supply safer for other people, but not on his own,” said his wife, Joanne Womboldt. “Jonathan would want recognition of the tragedy, where people are still suffering and dying, and recognition that scientists and people in business and government had a big responsibility to protect people. He would want people to know greed is something that should be avoided when you’re in a position of power.”

The litany of medical, emotional, and political hurdles Mr. Wadleigh confronted would have made most people despondent or furious. And yet, friends and family said, the anger remained in his words, rather than in his demeanor or the tone of his voice.

“He was one of the most charming people I ever knew,” said Mr. Wadleigh’s half sister, Anne Gibert Hook, of Lummi Island, Wash., and Manley Hot Springs, Alaska. “He was wonderful to be with – he was just fun.”

By age 9, Mr. Wadleigh was in a wheelchair. As a teenager, he struggled on crutches along railroad tracks near his home in Vienna, Va., to teach himself to walk again. And along with being infected with HIV and hepatitis C, he endured surgery to replace both knees as a result of his arthritis.

“I think his bravery in the face of his medical disabilities was totally astonishing,” his sister Gibert Hook said. “He would just quite calmly go into the hospital and have these long operations.”

In the 1960s, he moved north to the Boston area and lived for a while with his sister, taking classes at Northern Essex Community College in Haverhill, where she was teaching. He later took classes at the University of Massachusetts at Boston and Boston University, his wife said. Mr. Wadleigh became versed in computers and worked for many years in programming and marketing at hospitals, companies, and nonprofit organizations.

His brother Larry had died, at 21, in a 1965 car accident. His other brother, Robin, who also was afflicted with hemophilia, died of AIDS in 1985 after being infected through blood products.

And two years earlier, in 1983, Mr. Wadleigh had learned that he, too, was infected with HIV through the clotting factor he used to address hemophilia.

Speaking to the Globe in 1995 about the decisions drug companies and government agencies made that left tainted blood products on the market, he said, “I would say my anger, rather than diminishing, has grown, the more I have learned.”

Still, Mr. Wadleigh said, the losses he suffered and the disillusionment with government and business institutions made him cherish everything else even more.

“I have experienced the worst you can get and the best you can get,” he said in the 1995 interview. “I don’t think I could appreciate what I have and what I’ve had if I hadn’t had the bad experiences. It’s that difference that adds to the depth of life.”

Mr. Wadleigh and Thomas Fahey founded the Committee of Ten Thousand in the late 1980s. The name came from medical estimates, sometimes disputed, that one in 10,000 men are afflicted with hemophilia. In its early years, the organization said one hemophiliac died every day as a result of HIV-tainted blood products. Fahey died in 2002.

Along with leading the organization in its early years and working on the class action lawsuit, Mr. Wadleigh continued to live as vibrant a life as possible, given medical limitations.

“Once he said to me, ‘You know, Anne, if I didn’t take my medicine, I’d be dead in three days,’ ” his sister said. “And he just lived that way. There were times when he was told he might die soon, so he’d take a trip to New Zealand. That was his response to imminent death.”

Mr. Wadleigh and his wife bought land in Royalston and restored a 1760 farmhouse.

He also became a life mentor of sorts to others who faced death through infection by blood products.

“He was somebody who was a great person to empower people to find their own path,” his wife said. “Jonathan would say: ‘These are your goals and these are your skills. You have to be socially responsible, but follow your dreams.’ “

“Merhaba” from Istanbul

The World Federation Congress in Istanbul has been both spectacular and exhausting! With over 4,200 in attendance from over 100 countries, delegates represent developed and developing countries, different ethnicities, races and religions, and are patients, patient groups, doctors, treatment centers, researchers, pharmaceutical manufacturers and distributors.

Each day opens with a plenary session, and then there are lectures and presentations on either a medical/scientific track, or a multidisciplinary track. The multidisciplinary track includes psychosocial, patient organization or individual perspectives. I’ve a great interest in inhibitors now, as I am writing a book on them, but was unable to get to the inhibitor presentations. (I’ll be attending the Inhibitor Summit in Denver in July and will report from there) I find myself most interested in the patient organization challenges and the presentations representing a patient perspective, as this is where a lot of my work is focused. For example, my friend and colleague, Maria Andrea Belen, a mother from Argentina and also the Cordoba Chapter president, gave a wonderful presentation on the perspective of siblings (I am going to print it in an upcoming issue of PEN). I recall when I first met M. Andrea in 2000, at the WFH meeting in Montreal. She had come on her own, was a bit overwhelmed, but wanted to do something for the families in her corner of Argentina, which she felt was neglected. And now, look at her: eight years later she is reputed to have the strongest chapter in Argentina and is presenting papers at the WFH! This is empowerment in action; leadership manifested.

The theme of this Congress is “Treatment for All.” This is a good vision, but we are a far cry from that. I met individually with representatives from Pakistan, Nepal, India, Sri Lanka, the Dominican Republic, Romania, Ethiopia, and Zimbabwe. Challenges with access to factor continue, ranging from countries like India, which can mobilize financing to pay for some imported factor, to countries like Ethiopia, which has nothing. And Zimbabwe? If you’ve read my blog, then you know what it is like there. In Romania, the government has shown great progress and is buying more factor, but it still needs to be better distributed to the areas beyond the major cities. And Pakistan has made tremendous progress but educating patients remains a high priority.

You can see the huge disparity in priorities by reading what was printed in Hemophilia Daily, the Congress daily publication. From a representative from Ecuador: “Poverty. There are big differences from country to country, but in the end it boils down to money. Even if you convince your government that hemophilia is important and they need to provide supplies for patients, it still might not be possible.” Then from Germany: “At least in Europe, the main obstacle is still the availability of prophylaxis for everyone.” 

Still, in all the many years I’ve been attending these Congresses, I have to say that I see overall improvement. These Congresses at once make you wince at the millions of pharmaceutical dollars spent on travel, entertainment and marketing props that will only be useful for a few days, and yet you have to balance this with knowing that people are networking, brainstorming, strategizing. I witnessed wonderful connections being made that might never have taken place, with promises to help those in need. Now often when we return home, life resumes and the goodwill starts to fade fast as we get distracted with our daily lives, but there are a select few who will continue to follow through on promises.

One such miracle took place on the last day. I had just wrapped up a meeting with Tendayi Mamvura of Zimbabwe, mother of two boys with hemophilia and volunteer with the Zimbabwe Haemophilia Association. I had just seen her in December, of course, and have known her for years. I’ve been trying for a long time to get the international hemophilia community to do something to aid Zimbabwe, which basically receives help only from our company. And I think I’ve been the only person from the hemophilia community to visit the country since 2000! As we finished up our meeting, Jan Bult, president of the Plasma Protein Therapeutics Association, a nonprofit based in Washington DC, introduced himself to me. We had been hoping to meet at the Congress. When I introduced Tendayi to him, as she was getting ready to leave, he struck up a quick conversation with her, and, taken with what we told him about the utter lack of care and hematologists in Zimbabwe, suddenly invited her to the June 17th meeting–where she will be able to address 300 people working in this international community. She looked stunned and accepted; I couldn’t have been happier. At long last, perhaps now maybe we can get real aid and resources to long-suffering Zimbabwe! (Where aid agencies are now being targeted as acting illegally against President Mugabe)

I regret I didn’t get to see Kiss Lazlo, the Romanian father who biked for two weeks to attend the Congress from Romania, and to raise awareness of hemophilia by interviewing with media along the way. He made it, sore but happy, but with the huge crowd it was easy to miss certain people.

With so many people in attendance it was lively and crowded, exciting and draining. The pharmaceutical companies have their massive booths with plenty of educational material. The WFH had a splendid resource center where we could walk in a retrieve dozens of educational booklets on a variety of relevant topics. There seemed to be fewer patient organizations with booths, although I met the lovely guys from the Irish Haemophilia Society and strolled by the Algerian, New Zealand and Iranian Hemophilia Society booths.

And there are social events: industry has their own exclusive, invitation-only events, but there are also general events such as the cultural event Tuesday night at the Topkapi Palace, and the final night event at the Hilton. I had a ticket to it and never have missed one, but a bad headache laid me low, and I missed out on it last night.

Today was the general assembly, in which the national member organizations elect new leadership. Mark Skinner, former NHF president, person with hemophilia and current president of the WFH is up for re-election. I’ll post the results as soon as I hear. Good luck, Mark!

Thanks to the WFH for a remarkable Congress, really one of the best ever. The amount of coordination that must go into one of these events is almost incomprehensible, but the WFH staff and event planners make it look routine. Thanks also to industry for sponsoring travel for so many, and for providing food and drink and entertainment. And thanks to the Turkish Hemophilia Society for hosting this amazing event. We will all continue to work harder than ever to make treatment for all.

I am here till Monday, and will post a few photos of my tour. I haven’t seen anything of Istanbul till today. A city of 15 million, it is the only city on earth that straddles two continents!

See all the photos from the Congress here.

Check in tomorrow…

(Photos from top: With Dmitry Chistyakov, president of the St. Petersburg Hemophilia Society (Russia); With Dr. Uri Martinowiz, chief hematologist of Israel; With Daniel from Romania)

The World Meets in Istanbul

I am in historic and amazing Istanbul, Turkey, site of the capital of the once Byzantine Empire and this week site of World Federation of Hemophilia Congress, which brings together people involved with hemophilia from all over the word. It is the largest hemophilia gathering, with over 4,000 in attendance! Mark Skinner, person with hemophilia and former US NHF president, is the WFH president.

Mark gave a wonderful talk tonight at the opening reception, followed by a Turkish symphony, with exotic and rich music, and traditional dancers. Afterward, all 4,000 attended the exhibition hall, where the manufacturers and also the hemophilia national organizations from many countries had booths. This is an all week long event, which gives attendees the chance to hear what other countries are doing in terms of hemophilia treatment, research and best practices. It also is a great chance to network. For me, in the international community for 12 years, it is like a family reunion. Already I have met with representatives from the Dominican Republic, where we just held camp, Pakistan, Russia and India.

Visit the WFH website at www.wfh.org to learn more about their efforts to help educate, organize and bring treatment to people with hemophilia worldwide.


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