The staff at LA Kelley Communications wishes everyone in the hemophilia and bleeding disorders community worldwide a very happy new year.
This past year we witnessed too many pass away from untreated bleeds and we pledge to work even harder in 2010 to continue to help those in developing countries with bleeding disorders. Our deepest appreciation to all who help us in this noble endeavor!
Bob Massie was given a second chance at life this summer. In a previous blog I shared how this famous person with hemophilia, made famous by his own parents who tell his life story of growing up with hemophilia in the 1960s and 70s in the incredible book Journey, received a liver transplant this summer in Atlanta, in a historic operation. Bob is doing much better, and looks great. I was honored to get a phone call from him, and an invitation to his home in Somerville. I visited him last week.
I hadn’t seen Bob in years, not since he decided to run for the office of Lieutenant Governor of Massachusetts, the first person with HIV to do so. It was great to see him, and I had kept up with him periodically through his sister, Susanna, who also has a son with hemophilia. Bob wanted more than to just visit; he wanted to give back the gift of life: his remaining inventory of factor.
His gift of 120,000 IU of factor will indeed give life to many in developing countries. We have a long list at Project SHARE, and this meant tooth extractions, surgeries and emergency stores could be provided.
The Massie’s home is lovely, one of those solid, stately colonial homes that is so firmly built it could withstand a hurricane. Somerville is a densely populated city, with little space. Houses sit in a row, closely together. The Massie’s house has an ample back yard, with garden and trees. Inside, framed photos are everywhere: his family, including his lovely wife Anne, and his three children, John, Sam and Katie. A photo of young Bob in a wheelchair with Muhammad Ali caught my eye. I remember the wheelchair shot (sans Ali) in the book Journey. Other photos included Bob with Hilary Clinton, Bill Clinton, and Al Gore.
I got to meet John, who is a college student, a polite and friendly young man. It sounds like the Massies are all doing well; mother Suzanne, who is an expert on all things Russian and served even as advisor to president Ronald Regan, still at the age of 79 dashes off to Russia and continues her work there. Amazing, but when you read Journey, you are reminded again of her strength.
From the many people around the world this holy week of Christmas who will receive a most wonderful gift of factor, a gift of life, thank you, Bob Massie. We all wish you continued good health and happiness!
Great Book I Just Read
What Strength Remains by Tracy Kidder
I’ve been a fan of Kidder’s since reading (three times) Mountains Beyond Mountains. In this wonderful book, 
Kidder tells the remarkable story of Deo, a third-year medical student, and a refugee from Burundi, who arrives in New York in 1994 penniless and suffering from post-traumatic stress disorder. He escaped one horror to face new struggles: no knowledge of English sleeping in abandoned tenements in Harlem, working for $15 a day. Occasionally Deo, who survived horrors in Burundi, is disturbed by flashes of memory of his past. Kidder accompanies Deo for 6 months, documenting his progress, recording hsi story and eventually returns to Burundi with him. When recording his story about the genocide in war torn Burundi and Rwanda, Deo panics. Deo describes what his people call “gusimbura,” the ability–the unwillingness– not to recall bad things, and begs Kidder not to “gusimbura” him. He wants to forget.
Kidder is one of our greatest skilled, journalist writers; the story moves effortlessly, and deeply: Deo is first befriended by a nun, then an older couple, a sociologist and his wife, an artist, who pay for him to enroll at Columbia University’s School of General Studies. He eventually gets to medical school; you will be inspired at his determination and intelligence. All seems well. But all is not well. His return to Burundi is heartbreaking and healing; in the end, a glorious thing happens. Please read this book: it will make a wonderful holiday gift for someone you know–or yourself! Be inspired by the amazing life of Deogratis, whose name means in Latin, “Thanks to God.” Four stars.
This is big news for von Willebrand Disease patients: there’s a new product on the market. Wilate® just got approved by the US FDA for “treatment of spontaneous and trauma-induced bleeding episodes in patients with all types of von Willebrand disease (VWD),” according to a press release. Wilate is a high-purity plasma-derived product, which uses a double viral inactivation process in manufacturing: solvent/detergent (S/D) process and a special terminal dry-heating (TDH) system. No albumin is added as a stabilizer. Wilate is exclusively derived from large pools of human plasma collected in U.S. FDA approved plasma donation centers. Wilate will be available in the market in early 2010.
Wilate is produced by Octapharma, a Swiss-based company. This is the first time Octapharma has entered the US bleeding disorders market. Wilate will be in direct competion with Humate-P, manufactured by CLS Behring.
One thing interesting I learned is that this is the first product developed and manufactured specifically for VWD.
Here’s a quote from Octapharma: “Octapharma’s worldwide commitment to coagulation disorders dates back to Octapharma Group’s formation 25 years ago,” said Octapharma USA President Flemming Nielsen.”We are thrilled that U.S. patients will now have access to Wilate following its significant success in Europe as a next generation therapy. Octapharma is committed to providing the U.S. market with life-enhancing therapies.”
VWD patients now have more choices for treatment options. For more information, please visit www.octapharma.com.
Great Book I Just Read
Final Voyage: A Story of Arctic Disaster and One Fateful Whaling Season by Peter Nichols
Massachusetts (my home state) gave birth to the American Revolution and also the global whaling industry. This fascinating book recounts a terrible story of scores of whaling ships trapped in the Arctic region, as the captains tried to score as many whales as possible before the ice closed in for the winter. Nichols deftly parallels that story with the beginning of the whaling industry, which has direct ties to Puritans coming to the new world, religious intolerance in Massachusetts in the 1700s, and the Quakers, who almost single-handedly created this lucrative industry. Whale oil soon was lighting the homes of Massachusetts and then lubricating the machines of the Industrial Age, making some Quakers millionaires, even then. Nichols also details the decline of the industry: the discovery of crude oil in Titusville, Pennsylvania, which soon replaced whale oil; the decimation of so many whales left hunting lean. All these events culminate into a dreadful outcome for the ambitious captains of the whaling ships that last season of hunting, as they searched for the last whales in an early and fearsome storm. This book will enlighten you about many subjects, from religion and commerce, to whales and history. Three stars.
I have been so impressed with the publications and postings coming from the Hemophilia Federation of America, once a small-time, grassroots nonprofit, and now after 10 years, poised to become one of our strongest voices to Congress and industry. With the additions of Steve May and Kisa Carter, HFA has become a professional powerhouse of insurance publications.
I completely endorse their outstanding work. Please sign up to get their “Friday Update,” available through the colorful, active website: www.hemophiliafed.org
The timing couldn’t be better with big changes coming via health care reform. This article ran two weeks ago, about “medical debt.”
States begin to address medical debt
November 19th, 2009 by Steve May
Paying for health care is becoming increasingly difficult for American families. Fewer workers are receiving health coverage through their jobs, and those who do have job-based coverage face rising out-of-pocket costs. Not surprisingly, more families are going into debt trying to pay for the health care they need. The health reform proposals that are currently before Congress would prevent millions of families from accruing medical debt by making insurance affordable for people who are now uninsured, capping out-of-pocket costs for those with insurance, and making sure that people with low incomes have lower out-of-pocket costs. Some provisions in these bills will go further by helping people who are struggling with medical debt.
While these bills will help families and individuals avoid getting into medical debt, they don’t address every aspect of this complex problem. That’s where states come in. Some states have already taken action to ensure that low-income, uninsured or underinsured Americans are charged fair prices for their care, do not face high interest charges when they cannot afford to pay their medical bills immediately, and are protected from aggressive debt collection practices
Families USA has just issued a report which begins to address the various state efforts to curb the dire impacts medical debt has on people who are addressing illnesses. For more information about the Families USA report follow the link attached here: http://www.familiesusa.org/resources/resources-for-consumers/coping-with-medical-debt.html
Also check out: http://hemophiliafed.org/advocacy/blogs/
There are also some wonderful videos of actually patients sharing their stories–fabulous idea. Take advantage of the great and easy-to-read publications that HFA offers; write today and start receiving. Remember, they are working hard for all of us, and for your child’s future!
Great Book I Just Read
Shackleton’s Forgotten Men by Lennard Bickel
I am a huge polar explorer fan, and love to read every book I can about the subject, particularly the South Pole. This book pays tribute to the men who were the second half of Ernest Shackleton’s famed Imperial TransAntarctic Expedition of 1914. All of the attention has been put on Shackleton’s seemingly miraculous stamina, leadership skills and story as he saved all his men from near disaster in perhaps the greatest survival story every told. But while leadership books boast that not one died under his watch, this was not entirely true. On the other side of the Antarctic was the Aurora and its crew, set to lay out the numerous depots of food that Shackleton would need as he traversed the Antarctic on foot–a feat he did not accomplish. This book tells in riveting detail their story. Like Shackleton, the group lost their ship and supplies, and they suffered horribly. Only they never got the recognition for their heroic sacrifices. Fabulous storytelling by Bickel who also wrote Mawson’s Will, about the legendary Australian geologist and explorer, and teammate of Shackleton. I read this book in two nights! Four stars.
