November 2008

Visit to the UN; World AIDS Day

Last Tuesday I was privileged to travel to New York City to meet with His Excellency Francis Lorenzo, the UN Ambassador from the Dominican Republic. He had heard about our work with children with hemophilia in his home country, a country I have been working with for 10 years now. We were introduced by Juliet Hanlon, an entertainer who is also a UN Goodwill Ambassador. Juliet was present at the CCBF awards on October 28, and introduced herself, wanting to help our mission. Juliet met me in the UN lobby and Amb. Lorenzo soon showed up to greet us. We met over lunch, where I was able to share what hemophilia is, how it is treated, and how children in the US live normal lives with proper medicine. I happened to bring a vial of factor with me. He was really interested and asked excellent questions. As December 1 is World AIDS Day, I am sure he was linking the two in his mind and this makes sense; a sure way to stop the spread of AIDS in the developing world is to get people with hemophilia off cryo and fresh frozen plasma, and on to factor concentrate.

We spent much of the afternoon together, brainstorming ways our organizations might work together. I will introduce him to FAHEM, the national hemophilia organization of the DR, and I even invited him to camp. Next year will be our tenth anniversary of hemophilia camp in the DR and it will be an honor to have him attend. I had a brief tour of the Security Council chamber; sobering. As a graduate of the Fletcher School of Law and Diplomacy, I had once thought I would work at the UN, but life had other plans. Hemophilia became my destiny. It’s ironic that hemophilia now brings me back!

Thanks to Juliet Hanlon for making the introductions and for her time. My deep appreciation to Am. Lorenzo for his concern, his time and his ideas. It was a wonderful first visit to the UN.

Good Book I Just Read: The Magic of Thinking Big
This is a light yet powerful motivational book that will inspire you to do more. Author David Schwartz enthusiastically tells us that our attitudes and our vision are really the only things that keep us from attaining greater heights. With more focus, clearer goals, and above all an expanded vision of what we can be, we can all become greater than what we are. The books is easy to read, and has many anectodotes to illustrate what he means, though his message is clear enough. I like the section about the company you keep: beware of negative people, gossips, small minded people who distract you from your destiny and dreams. Your environment can greatly impact your goals; “guard your psychological environment,” Schwartz warns. I’ve read tons of books like this one, and I like this one especially for its simplicity, repetitive message and great enthusiasm. Written in 1959, you may be amused by his simple labels (“Mr. Negative and Mr. Positive”), irked by the references to housewives baking for their hardworking husbands, and amazed at the salaries he lists to aspire to. But then, the price of gas back then was what… $ .22 a gallon? Three stars!

Michelle’s Law

This is wonderful news to everyone with a chronic disorder and in college: on October 9, 2008, Michelle’s Law became Public Law No: 110-381.

Who is Michelle and what is the law? I just read about Michelle Morse. She was a lovely young lady from New Hampshire who sadly died of cancer. 

On June 25, 2007, Rep. Paul Hodes [D-NH] of New Hampshire introduced the bill. He’s my new hero.

Michelle’s Law “amends the Employee Retirement Income Security Act of 1974 (ERISA), the Public Health Service Act, and the Internal Revenue Code to prohibit a group health plan from terminating coverage of a dependent child due to a medically necessary leave of absence from a postsecondary education institution or any other change in enrollment at that institution that commences while such child is suffering from a severe illness or injury and causes such child to lose full-time student status before that earlier of: (1) one year after the first day of the medically necessary leave of absence; or (2) the date on which such coverage would otherwise terminate under the terms of the plan. Requires certification by the child’s attending physician. Applies such requirement to coverage offered in the individual market.”

Your child with hemophilia or VWD in college might find it necessary at some point to miss a lot of school, if he or she has a bad bleed, surgery or inhibitors. If your child loses their student status, they might not be covered under your insurance.

Michelle’s Law now makes it impossible for an insurance plan to terminate your child if he or she misses a lot of school due to medical reasons and loses their full time status. Every kid with a bleeding disorder in college should be made aware of Michelle’s Law.

NHF’s New Direction, Movie

The NHF ushered in new leadership at the 60th Annual Meeting in Denver this past week, just as our country has voted in new leadership. With many parallels to be made, there is a feeling that our community is ready for change. Val D. Bias, person with hemophilia and already a prominent leader in our community, was hired as the new CEO of NHF. The community faces a multi-front challenge to its current status: increasing pressure from payers to lower reimbursement rates; payers forming specialty pharmacies to switch patients away from traditional home care companies and 340B programs; tightening of funds to donate; speaking with one voice and one message; forming coalitions with other rare disorder groups; rising obesity in the bleeding disorders community. Many of these challenges were addressed in depth in the various workshops

About 2,000 attendees were said to be present at this historic meeting. For most it was a great reunion of long time friends and colleagues, and for many it was a first glimpse of the community with all it has to offer.

I have been attending NHF meeting since 1992, and saw many long time friends. In speaking with representatives of industry: home care companies, HTCs, pharmaceutical companies and the NHF chapters and hemophilia nonprofits, the most frequently mentioned word could easily have been “change.” Things are changing in our community, and without vigilance, a voice, a strategy and action, we could stand to lose many of the gains we have fought so hard to win over the last decade in choice and access of services and products.

Opening Ceremony: Theatrics or Thunder?

Perhaps this is why the opening ceremony was so different than any other I have seen. The room was a Democratic or Republican National Convention theme. Vertical banners with state names were placed in sections; a large screen projected images from the podium; and red and blue balloons poised overhead in a net, waiting to be spilled. Different, definitely different, people murmured. There was a cordoned off area with red, white and blue streamers: only certain people were to sit there, apparently.

Then the lights went out and the somber and foreboding 12-minute trailer of “Bad Blood” was shown. When it was finished, lights went out again, then a spotlight shown on Val, alone on the podium, seated on a chair. Val spoke for most of an hour, sharing his vision of where NHF should lead the community. No doubt aware of the audiences’ curiosity about the trailer, he stressed, “Let’s put our past in a place of honor, where it belongs, and move forward.” With that he introduced the Campaign for Our Future, which was already introduced to chapter leaders in June.

The slogan is: Access to Care Today, Achieving a Cure Tomorrow. Val stressed four areas of focus:

Government awareness and support
Education for all life stages
Access to care at HTCs
Research and training

A check for $2 million was presented from Novo Nordisk to support the campaign. Most if not all the manufacturers have also contributed to the campaign, which hopes to raise $10 million to implement the campaign. Then the balloons overhead were released and everyone cheered and applauded. It seemed to be a new start for the NHF, and most people left feeling upbeat.

Later on, as people filtered out of the conference hall, there seemed to be second thoughts and questions by people. Many asked each other, “What did you think?” The trailer for “Bad Blood” was grim, dark, and pointed fingers some said. What was the point of the film? Have we not had 23 years of success, with no documented viral transmission? “What does the movie have to do with the new campaign?” one attendee asked. “If it’s for the future, why are we bringing up this past again?” Some people said they cried just watching the trailer as it evoked strong emotions of children contracting AIDS in the 70s. Some had nodded their heads approvingly as the film was being shown. Others feared the film was too strong, too biased, that it set the wrong tone for the NHF meeting: the movie would stir up negative feelings and fear in the absence of adequate general information about blood safety to new parents at a time when plasma products are just making a comeback. Everyone suddenly seemed to have a strong opinion. It was indeed a different kind of NHF opening: thunderous to make people take action, or theatrical to gain attention?

There was a lot to think about, and a lot to do. I was privileged to attend the Medical and Scientific Affairs Council (MASAC) to present my factor donation program, Project SHARE. As we donate millions of units of factor each year, we thought it a good idea to let MASAC know how we operate and answer any questions they might have.

The two and a half days NHF conference were filled with workshops, lectures, and symposia on all types of subjects related to hemophilia and von Willebrand Disease. Social events included lunches, raffles, and the final event, sponsored by Baxter: a wonderful and lively band, dancers, plenty of food, picture taking and dancing. Everyone got in on the dancing, which went till 11 pm. NHF planners and staff are to be commended for their ability to accommodate so many people with so many needs in so many sessions so perfectly and graciously.

If you attended NHF’s Annual Meeting this past week, please feel free to leave a comment! I’ll write next week about some of the meetings I attended while at the meeting.

See all the photos here!

This Not-So-Royal Disease

by Andrea Trinidad-Echavez

This week, I am posting a wonderful article by colleague and friend Andrea, from the Philippines. I was privileged to travel with her for one week. We both met Jeffrey and his mother Rita.

Every year, Rita Rodriguez, 54, would religiously light a candle in the early mornings of All Saints Day in remembrance of her four sons– Noel, Ricky, Materno and Antonio — who died one after the other in a span of two decades.

Cursed, was how people from her hometown of Tanjay in Negros Oriental, thought of Manang Rita. Little did they know that a rare hereditary bleeding disorder called hemophilia was the culprit behind their deaths.

“I would have wanted to go home to Negros to personally visit their graves but life is hard,” said the 54-year-old mother of eight, who has been struggling to keep another son Jeffrey, from falling into the same fate as his older brothers. In between Jeffrey’s confinements, Manang Rita would make ends meet by offering services as masseuse or cleaning houses and doing laundries.

Jeffrey, 25, a psychology student in Adamson University, was diagnosed with hemophilia when he was barely three, following a supposedly minor injury on the head that caused profuse bleeding. By then, two of Jeffrey’s older siblings had already succumbed to strange internal bleeding episodes.

Manang Rita remembered her older brother, Luis Torres, would also profusely bleed from the smallest injuries. But they did not know that hemophilia runs in their family.

Manang Rita’s oldest child Noel died in the early ’60s from an unexplained ailment. He was only three years old. Noel bumped himself while playing. Shortly after, he developed a tumor-like lesion that wouldn’t go away. He died a few days later.

Another son, Ricky, died in the ’70s at the age of 5. He also died of strange bleeding after getting minor injuries from playing.

In both deaths, Manang Rita hardly understood what happened to her boys. She could only grieve over the loss and hoped well for her other children.

But her reprieve from grief ended when in 1989, Materno, then 25, died after days of suffering from severe headache.

“We gave him pain relievers and put ice on his head. But when it refused to go away, we decided to bring him to the hospital,” Manang Rita said in mixed Cebuano and Tagalog. By then, local doctors already knew the name of the strange disorder that plagued the boys in Manang Rita’s family.

“I was told the boys have hemophilia. It was only then that we became aware of the name of the bleeding disorder in our family,” Manang Rita shared, her voice quivering in between.

Doctors gave Materno a blood transfusion to replenish the blood lost in the internal bleeding. He was also given a dose of the expensive Factor 8 concentrates derived from human plasma that would instantaneously stop the bleeding.

But by that time, it was too late to avert Materno’s condition. He died in the hospital.

In 1997, another son, Antonio, complained of severe stomach pains. He urinated blood, causing her mother to be concerned. Unknown to Manang Rita, Antonio, then 26, fell off from a tricycle. Though he did not sustain any open wound, Antonio’s injury caused internal bleeding which lead to his death in less than one week.

“People thought she was cursed because of the deaths of her four sons,” said Rizalina Magalso, a cousin of Manang Rita and herself a mother of 13-year-old Dan Louie, also a hemophiliac.

In 1999, Manang Rita’s youngest son, Jeffrey sustained injuries from a fall and again suffered excessive bleeding. By then, with four sons dying of bleeding, Manang Rita was already on the verge of despair.

“I told the doctors I could no longer bear it if something bad happened to Jeffrey,” said Manang Rita.

The doctors sympathized with her and advised her to bring Jeffrey immediately to Manila and seek help at the Philippine General Hospital.

She sold all her family’s little landholdings if only to save her youngest son and admitted him at the PGH. After several bags of blood transfusion and over a month of stay at the hospital, Jeffrey became well enough.

But the deaths of her four sons led Manang Rita to decide to stay in Manila for good, where Jeffrey has better chances of surviving.

Called the “royal disease,” hemophilia is a hereditary bleeding disorder that affects the males of the family. Mothers are usually the carriers and they pass on the defective genes to their male offspring.

Several members of noble families in Europe were affected by it, thus the monicker “royal disease”. Written accounts identified Queen Victoria as the first royal carrier of the disorder, with her eighth child Leopold, born in 1853 as the first recorded royalty with the disease. Leopold died at the age of 31 from an intra-cerebral hemorrhage after a fall.

Two of Queen Victoria’s own daughters, Alice and Beatrice, were also carriers of hemophilia. The condition was transmitted through them to several royal families in Europe, including Spain and Russia. The most famous affected individual was the son of Tsar Nicholas II of Russia, Tsarevich Alexis, who was born in 1904. There were speculations that the illness led to severe strain within the royal family, and enabled Rasputin to gain influence over the family, ultimately leading to the downfall of the once powerful dynasty.

The WFH estimates that .01 percent of the population or about 1 in 13,000 are affected by hemophilia.

In the Philippines, the Hemophilia Association of the Philippines for Love & Service (HAPLOS) said about 6,000 to 8,000 could be affected by the disorder. However, only a little over 1,000 have been registered. Most of the sufferers come from the same families.

Thanks to modern technology, hemophiliacs like Jeffrey may soon lead normal lives with the availability of factor concentrates that can instantaneously stop bleeding. The medicines, however, are very expensive and are still unaffordable for people like Manang Rita, who barely manages to survive with her meager income as a masseuse.

“Even though life is hard here, we will endure if only for the sake of Jeffrey. I am thankful to God that despite everything, He has helped us survive this ordeal,” said Manang Rita.

Great Book I Just Read
Daughter of the Desert, by Georgina Howard

If I tried to describe Gertrude Bell to you, you might think I was making it up. But this is a true story about one of the world’s most amazing women. Born into a privileged English family in 1868, Gertrude Bell seemed to have been destined to become a daughter of the desert, with her sharp mind and energetic physique, she excelled at whatever she attempted. Her resume would include archaeologist, spy, Arabist, linguist, author, poet, photographer, mountaineer and nation builder. And despite her intrepid nomadic roaming, her warm and intimate letters to home revealed a sensitive, loving woman. She eventually would become perhaps the most famous woman of her time, exploring the deserts of Arabia on her own, learning Arabic, and meeting privately with the Bedouin. She learned more about Arab life and culture than any other westerner. Her skills and knowledge were only surpassed by her passion: she eventually grew to love the desert and the Arab people. The timing was perfect for England. During World War I, when the Ottoman Turks pushed into Arabia, the British needed someone to help bring the Arabs in as allies. Like her friend Lawrence of Arabia, Bell became the British government’s diplomat. She eventually helped win the Arabs to the British side, helped to build the nation of Iraq and was recognized by the Arabs for her dedication and achievements.

Anyone wanting an informed opinion about Iraq currently should read this book. It’s a sobering reality check when you read about the sacrifices made by the British 100 years ago and you think you are actually reading about what has happened in the last six years. It highlights the long history and complex nature of the Arab culture, beautiful and mysterious, and the obstacles in uniting a diverse group of people. Inspiring, informative. A whopping four stars. I can’t wait to read it again.

The CCBF Gala Ball: It All Started with a Child

I asked myself not only quietly, but on stage, aloud to the crowd of some 600, what was I doing in New York City, on stage, sharing an award with three remarkable celebrities on my birthday? Less than a week before I was in the sweltering heat of the Philippines, visiting families with hemophilia who earn only about $3 a day.

I attended the incredible “Breakthrough Ball” Gala fundraiser for the Children’s Cancer and Blood Foundation (CCBF) on Tuesday, October 28, not only as a guest but as an honoree. Actually Save One Life was being honored, the nonprofit I founded in 2000 to offer direct financial sponsorship to the children with hemophilia in the developing world. Also being honored were rapper/music producer Swizz Beatz, actor Steve Guttenberg, and former New York Yankees pitcher Al Leiter. To see my name on the program with these gentlemen was humbling.

This was a black tie event, my first. After lavish cocktails and hors d’oeuvres, we were seated. I sat with Dr. Donna DiMichele, renowned hematologist of the New York Presbyterian Hospital, who is on the board of directors of the CCBF, and who recently just joined the board of Save One Life, and also Tara Reddi and Janis Cecil (with husband Charles) of the Marlborough Gallery. I truly enjoyed chatting with artist Hunt Slonem, who sat to my left. To make the evening even more special, my daughter attended as my date, as this was also her birthday!

Actor Charles Grodin opened the evening, and surprised us all with a guest appearance by singer Lou Christie! He sang his signature “Lightnin’ Strikes,” a song released in 1966. I loved listening to it in 7th grade, and still do! 

Then Charles Grodin aired a music video by Swizz Beatz, which showed him visiting children with cancer in the hospital. He created a theme song for the CCBF and was the first to receive an award. I must confess I had never heard of him (I think I’ve been traveling a bit too much these past few years) but what an exceptional young man to be so devoted to charity! 

Then Steve Guttenberg was presented with his award. I didn’t realize this comic superstar had done so many charitable things. From spearheading an effort to get 50,000 eyeglasses for low income children, to volunteering 16 hour days incognito to help Katrina victims, to funding the “Guttenhouse,” a transitional home for foster children. 

Also accepting an award was Al Leiter, who has 19 years in the Major Leagues as a pitcher, and has won nearly every philanthropic award MLB offers, including the 2000 Roberto Clemente Award. He is now a baseball analyst for the YES Network. He is one athlete renowned for his charity, having given more than $1.5 million since 1996 to various children-related charities in the New York area and in south Florida.

An incredibly moving speech was given by Ron Iervolino, president of CCBF, that had many of us in tears. His own child suffered from cancer, and he appreciates the generosity of the audience and of the celebrities in helping to fund research for a cure. Ron presented me with my award, and again, I was humbled to accept.

It was truly an honor to be included among such amazing people. We often hear so many bad things about celebrities; it was refreshing to be reminded that so many of them work quietly and generously. I thank the CCBF for honoring them. I had a warm handshake from NFL great Tiki Barber, and then took the podium to thank the many people involved in this evening.

I accepted the award, not for what I have done, which by my standards hasn’t been much yet, but as a pledge for what I will do. I promised the audience that this evening, on my 51st birthday, I would enter the second half of my life completely dedicated to Save One Life, which will become the voice of individual patients with hemophilia, impoverished and suffering. I pledged that I would not rest, or retire, and would work until my last breath to alleviate the suffering of children in the Third World with hemophilia.

While standing for photos with the honorees, I must comment on how friendly, down-to-earth and kind they each were. I wish we could give more attention to celebrities like these who do such outstanding work for children who suffer. Ron and I both know: nothing is worse than watching your child suffer. And nothing is as amazing as seeing strangers help and care.

So how did this all happen? How did I end up having this photo with three such handsome celebrities? I have to thank Tara Reddi first and foremost. Vice president of the Marlborough Art Gallery in NYC, her cousin’s son, Bahnu, has hemophilia and lives in India in Vijiawada. He happened to be registered as a beneficiary of Save One Life. When Tara learned this, she decided to learn more about Save One Life. She was so touched that we were helping children like her cousin’s son, and offered to help us. Soon, she became a board member, and soon after, she had a fundraiser for us at her Gallery. Dr. Donna DiMichele attended that event, was surprised to learn about Save One Life (Donna and I have known each other for years, but we’ve been quiet about Save One Life till now) and suggested my name as honoree for tonight. So thank you, Tara and Donna! You have helped our small organization grow in so many ways.

I’d also like to thank Les Lieberman, chair of CCBF, for allowing me this great honor. And to the many corporations who donated to CCBF on behalf of me: Bayer Corporation (Terry, Paul, Marianne, Bill, Joe), Baxter BioScience (John, Michelle, Pete–so sorry the snowstorm kept you away!), and Grifols (Ray, Eva, Virginia, Kathy and Chris). Thanks also to attendee Neil Herson, president of ASD Healthcare, who sponsors 46 children through Save One Life, and to Patrick M. Schmidt, CEO of FFF Enterprises and Save One Life board member, who also sponsors 46 children, but could not attend. Thanks to those who donated but could not attend: CSL Behring, Ellis Sulser of Factor Support Network; Barbara Chang of National Cornerstone Healthcare; Shari Bender, mother of a child with hemophilia; and Eric Hill, president of Biolife.

You all made the evening very special, and given us all new motivation to ensure the vision of Save One Life is fulfilled–that every child in poverty with hemophilia will have a sponsor, someone who cares. No one, no child, should have to suffer alone or suffer at all. Thank you and God bless you who work on behalf of ill children.

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