November 2010

Preserving Our Past

I recently hauled out about 35 8mm video tapes of my family going back to when my son was born. The early ones are grainy, not great quality–they are after all about 23 years old and technology has surely changed–but at least we have some memories. The more recent ones are bright, exciting, lively, captivating. Maybe it has to do with the tape quality, but maybe it has to do with all the stress we were under from that time, as we spent a lot of time worrying, in the hospital, and under a lot of pressure.

Now I am converting them all to my iMovie, backed up on external hard drives, digitized and immortalized for all time. I can edit them, look at them at my leisure, add titles, special effects, voice overs… even improve their quality. You definitely feel a sense of closure when you have secured your family’s history.

This is also what Barry Haarde is doing–preserving our hemophilia history by creating the “Hemophilia Archive,” collecting in a website everything he can find related to hemophilia. It’s a daunting task, but he is compiling what will be the best and most definitive collection of hemophilia videos, newspaper articles and books.

Barry’s work was just profiled in my newsletter PEN, and he starts our article by asking who is Ryan White? Excellent question. We have a new generation, raised on excellent products, prophylaxis and tons of educational materials and social support, that hopefully will never endure what our children endured (extreme ignorance? Remember there wasn’t internet, Google or even a book on hemophilia in 1987!) or what the previous generation endured: HIV, hepatitis C, the deaths of thousands of fine young men.

Barry is a man on a mission. I urge everyone to sign up to receive his installments of the hemophilia archives, and to contribute something. Recently, I sent him the first two copies of PEN, started in 1991. Very amusing; a total circulation of 50 and Xeroxed. I also sent him the cover to the People magazine produced the week my son with hemophilia was born. Right on the cover is breaking news about the Ray brothers (do you remember them?) who were fire-bombed out of their trailer home in Florida, because the three boys had hemophilia and HIV.

Barry and his older brother John were born with hemophilia and each contracted HIV. John died, as did Barry’s brother in law. Barry is creating the Hemophilia Archive to preserve the memories of our past. Our past, the mass contamination of thousands, is truly unique in the annals of medical history. Each life deserves to be remembered.

Coincidentally, I am going this week to see the Boston premiere of “Bad Blood,” the new documentary about the HIV contamination of the 1980s. I’ve seen it already, have reviewed it in this issue of PEN, and on Wednesday night will take my family to see it. I urge you all to see it as well, and to help Barry build his archives.

Take a break from your own home movie archives, as I will, or from recording the present–Thanksgiving, hockey games, school plays– to help our community preserve its precious past. And thanks to people like Barry and Bad Blood director Marilyn Ness for helping to preserve our past. (Archived photo of Laurie and Brian Craft, our hemophilia comedian, another fallen hero)

Staying in Touch With Insurance Reform

When I was 18 and became eligible to vote, I began reading weekly news magazines to try to stay abreast of world and national events. Tonight I skimmed through Time magazine and tried to get a better understanding of health care insurance.

I know it’s hard to get started learning a new subject when you’ve never tracked any national world news–I mean, who’s the new Speaker of the House? What might change the course of politics in Zimbabwe suddenly, and what is China’s environmental status? I found the news magazine The Week, which gives brief but insightful synopses of the week’s editorials on events, in a debate pro-con format, which allows us to make our own mind’s up about what we are reading.

HFA’s Friday Update is an email newsletter that gives you excellent summaries of insurance news that has to do with bleeding disorders. All you have to do is subscribe at, and an email will arrive every Friday in your Inbox, with a summary like this below, with live links to complete articles. I can think of no better way to watchdog what is happening–something we all need to do! And you may have heard that HFA president (and friend) Paul Brayshaw, and a photo op recently with President Obama, in Paul’s backyard! So… start reading this coming week, and learn!

Sample for this week….

Senate Votes to Postpone Doctors’ Medicare Cut

The Senate voted late Thursday to postpone a massive cut in Medicare pay for doctors, agreeing to pay doctors at current levels through Dec. 31. Senate leaders also promised to work toward a 12-month postponement before the end of this year. Doctors were threatening to stop taking new Medicare patients if the cut went through. The measure now goes to the House, which has adjourned for the week. House Majority Leader Steny H. Hoyer, (D-MD), announced Thursday evening that the chamber would take up the measure Nov. 29. Read More

Department of Health and Human Services Amends “Grandfathered” Regulation

As of November 15th, employers will now be able to change insurance companies and keep their “grandfathered” status as long as the change does not result in a significant increase in cost or a significant decrease in benefits as laid out in the health care reform law. One of the concerns that prompted the change was that the original rule may have given an unfair advantage to insurance companies when negotiating pricing and benefits with employers because of the employer’s fear of losing “grandfathered” status. Learn More

Republican Senators file brief in favor of court challenge to Health Care Reform

The Senators filed a 16-page brief in the federal case based in Florida arguing that a key part of the new healthcare law (the requirement that all individuals have health insurance) is unconstitutional. Learn More

Department of Health and Human Services Provides Guidance on “Exchanges”

The document is the first in a series that the Department of Health and Human Services (HHS) will publish over the next three years to provide information to states and the territories seeking to establish a Health Insurance Exchange under the Affordable Care Act. Regulations for public comment will be issued in 2011. This guidance is intended assist states and territories with their overall planning, including legislative plans for 2011. Learn More

Bipartisan Bill Would Allow State Waivers From Health Law Provisions

Sen. Ron Wyden, (D-OR) and Sen. Scott P. Brown, (R-MA) collaborated on a bill (Empowering States to Innovate Act), that proposes to move up the date when states would be allowed to opt out of certain obligations in the health care overhaul law — including the controversial requirement that all people purchase health insurance. The bill is the first time a Democrat has teamed up with a Republican to try to modify the health care law. It is also the first time a Republican has offered legislation to ease a requirement in the law rather than repeal it. The Department of Health and Human Services would have to confirm that the state provides coverage at least as affordable and as effective as what the law requires. In addition, the state alternative would have to insure a comparable number of residents and not increase the federal deficit.

Senate Finance Committee Holds Hearing on Health Care Reform Law

During the hearing on Wednesday, the Committee heard from Administrator Donald M. Berwick. Berwick testified that his goals include: better coordination of care through systems such as Accountable Care Organizations, improved care for chronically ill patients and prevention. He also stated “his job is to make Medicaid stronger and more viable, and he realizes states are facing tremendous budget pressures in the economic downturn.” Republicans used the hearing as an opportunity to voice their concerns regarding the new health care reform law and their intentions to closely monitor Mr. Berwick’s actions at CMS, while Democrats used their time to show support for the new law and for Mr. Berwick. To download Donald Berwick’s testimony and the statements from the Senate Finance Committee visit the Committee’s website.

CMS Introduces New Center for Medicare and Medicaid Innovation

Created by the Affordable Care Act, the Innovation Center will examine new ways of delivering health care and paying health care providers. CMS also announced the launch of new demonstration projects that will support efforts to better coordinate care and improve health outcomes for patients. For more information on CMMI visit their website.

The New York Times Reports on “Health Rule Waivers”

Administration officials are issuing more waivers to try to prevent some insurers and employers from dropping coverage. Read More

State Update

State Medicaid Directors Move Toward Formal Affiliation with the National Governors Association Read More

NHF’s 62nd: Carnival, Concern, Unity

The theme of the 62nd Annual Meeting of NHF was “Marching Forward,” appropriate for a place like New Orleans, where you can expect a high school marching band to turn the corner of your street at any time. Situated at the Marriott on Canal Street, just a carnival bead’s throw from the Mississippi River, the event hosted about 3,000 community members, including physicians, nurses, social workers, nonprofit staff, NHF reps, pharmaceutical and homecare reps and of course, consumers!

My week started with a five-hour workshop on Novo Nordisk’s new HERO program, the largest psychosocial research project in hemophilia history. We gathered a select group of HTC and consumer representatives to discuss ideas to bring the results of HERO to the US, to share with our community: what can we learn from the results and what to do with the results? It was a lively and challenging task, but with a great group that meshed well, it was also fun!

Opening night was heralded with a marching band and carnival characters on enormous stilts, handing out strings of beads to all. NHF Chair Stephen Bender and father of a daughter with hemophilia gave a moving opening speech recalling his daughter’s birth, and how he became an advocate for better health care as a result of their harrowing experience. Executive director Val Bias gave a motivating speech about unity in the bleeding disorders community. He also unveiled a new campaign for women with bleeding disorders, called “Victory for Women.” This will replace Project Red Flag.

Later we walked through the exhibit hall, which contains booths by all the vendors who serve our community, and all had a Mardi Gras theme. There was face painting, games and great food.

There were many sessions on a variety of topics related to bleeding disorders. Women with bleeding disorders figured prominently as a topic. I also attended a very interesting town meeting by the Committee of Ten Thousand—COTT. COTT is often referred to as our third national organization. We have NHF, HFA and COTT. This certainly doesn’t refer to third place. Each of our national organizations has a vital role to play.

This two hour meeting had two topics: blood safety, prompted by the new movie Bad Blood; and privacy issues for patients. The first topic was kicked off by Corey Dubin, a person with hemophilia and an icon in our community. Next to him was Nathan, representing the Gay Men Health Crisis organization. This year 18 senators sought to repeal the FDA ban on blood donations from gay men in light of all the safety procedures and testing performed in the US. The ban has been in place for 17 years, started during the HIV contamination of the 1980s.

A lively discussion took place but what was unique and wonderful was the mutual admiration and respect of COTT and GMHC. Each respected each other’s view about blood safety and the right to donate blood, and whether that even was a right.

The second topic unleashed a firestorm of concern: patient privacy rights. Are patients being adequately informed of how their data is being used? One patient, a well known advocate, stated that patient data is gold. People in our industry make money off of patient data, good money. How is this safeguarded? Patients are signed up for clinical studies—are they well informed? With health care reform, and anticipated countermoves by the insurance industry, patient data is needed and desired to justify decisions to restrict access to care, access to products or to protect clinical treatments. Data is everything. But do patients know who has their data?

With representatives of several different and independent organizations and patient groups—and industry—in the audience, it became clear that each group had similar questions about ethics, funding, transparency, and patient protection of any organization collecting patient data. I explained how LA Kelley Communications collects patient data through our mailing list, and how fiercely we protect it.

For other groups, it’s not as clear what the data is to be used for ultimately. Will it be sold? There’s a market for it. A big discussion ensued about bringing various groups to the table to discuss privacy and to get some questions answered. COTT has acted as a watchdog for blood safety, and now may act as a watchdog for patient privacy— a topic more vital than ever in this era of health care reform. Patient Data equals power, power to discriminate, make policy, earn money, effect government policy… the possibilities are many. This data is our data—our child’s data, our carrier daughter’s data—and we need to protect it by knowing who has it and what they plan to do with it.

After the town meeting, some people went to social events. We had a special guest—Usha Parthasarathy from India, with whom I had just finished a 16-day tour of India. She was able to promote our Save One Life program to many people, and secured more sponsorships for the 300 children who are waiting for sponsors.

On Saturday morning I facilitated a symposium hosted and funded by Baxter Healthcare, titled “Paving Your Way, Protecting Your Future.” Guest speakers included Don Molter, social worker and career counselor at the Indiana Hemophilia and Thrombosis Center, and Dr. Art Wood, vice president of Patient Services Inc. Don stressed the importance of taking the SATs or ACT, applying for scholarships and to be open to education even later in life—especially in this economy, when many people need to rethink their career choices. He introduced the Baxter Education Advantage Scholarship, which helps people with funding for college and also vocational training. This is open to anyone, not just those on Baxter’s products.

Art’s presentation included salient highlights of the ACA, the new health reform act, and how this may impact families with bleeding disorders, and how patients can take action now to get informed and learn more. It will be absolutely vital for everyone to read their insurance policy and to read updates regarding the ACA and how it impacts individual policies.

We also had two community speakers: David shared a very touching story of having hemophilia, HIV, hepatitis, losing his thumb in an accident… and losing his wife of 24 years when the marriage was overwhelmed. With a deepening of his faith and assistance from his HTC, he successfully returned to work and now is remarried. Dwight and Kathleen are parents of eight children, four with hemophilia, and shared their trials in trying to stay insured. With the help of PSI, they were able to make it. Their handsome son Patrick was in the audience, admiring his parents.

The three day event closed with a final event, also sponsored by Baxter, at a warehouse where we walked by enormous plaster of Paris statues of King Kong, Pokemon, King Neptune, the Cowardly Lion and Yoda—all Mardi Gras characters. Also we saw floats being prepared for the next Mardi Gras. It was really amazing! At the end of the walk was a large indoor room to house about 2,000 people who feasted on New Orleans cuisine, dance to an excellent band, and have their fortunes read by Tarot card readers. I caught up with my friends from California—Laurel McDonnell, Paul and Linda Clement—and enjoyed the company of our very special community.
Please visit these websites to learn more:

See you in New Orleans!

I am looking forward to arriving in New Orleans this week, to attend NHF’s 62nd annual meeting. I haven’t missed one in well over 15 years. There should be lots to talk about, with the new Health Care Reform bill passed this year, and the showing of the new documentary “Bad Blood.”

I’ll be facilitating a great symposium on Saturday morning, called “Build Your Tomorrow Today,” hosted by Baxter BioScience. The topic is a good one for anyone with a transitioning person with a bleeding disorder such as a teen, college kid, or even an adult who is looking for a new line of work. We will have two expert speakers: Art Wood of PSI, who will address the insurance issues that come with new phases of life. And Don Molter, a career counselor, Indiana Hemophilia & Thrombosis Center. We’ll also have community members give testimonials about their experiences in trying to change jobs or careers, and handling insurance,

Breakfast starts at 6:30 am and the program starts at 7 am sharp; see you there!

Great Book I Just Read
Genius on the Edge: The Bizarre Double Life of Dr. William Stewart Halsted by Dr. Gerald Imber

This is the amazing story of an American hero, the founder of modern surgery. Consider that just 100 years ago most doctors only needed a high school exam to get into “medical school,” and most had never even seen a patient by the time they graduated! It was more snake oil than science, and this at a time when Europe, particularly Germany, surged ahead in medical advances. In 1850 there was no anesthesia, no germ theory, no blood transfusions and few surgeries were even performed because the outcomes were usually disastrous. The best surgeon was usually the fastest. Patients who faced surgery often died of infection, gangrene or shock from blood loss.

Then along came Halsted, and changed all that. He studied in Europe, became a surgeon, and helped to create the leading edge medical school at Johns Hopkins University, the premiere hospital in America and one of the few that didn’t flunk the Carnegie Institute’s national assessments. He initiated the aseptic technique in America, which cut infections up to 90% or more following surgery. He insisted that everyone use latex gloves; he pioneered mastectomies, hernia repairs, and more. And even more, he trained men who became outstanding leaders and pioneers in their fields, including William Osler, William Henry Welch, Harvey Cushing (there are bios on each and I am going to read them! These men are like superheroes).

The book delves as much into his bizarre personality and personal life as much as his towering achievements. He was addicted to cocaine, and later morphine, which he apparently never kicked. He was fairly antisocial, and quite particular about his clothes and Italian shows–yet his house was cluttered like a hoarder! There is no doubt that his mark on history is great.

Whenever you or your loved one has surgery in the US, give thanks to William Halsted, whose high standards, complete dedication and genius, saved literally countless lives. I can’t wait to go to Johns Hopkins someday and see his portrait. I feel like I know him from this excellent book! Three stars.

World’s First Inhibitor Book Published

Three years in the making, and it’s finally here–Managing Your Child’s Inhibitor, the world’s first book on inhibitors. At 279 pages, this is a comprehensive look at everything parents and patients need to know about so many aspects of inhibitors. From ITI to pain management, from insurance to attending school, this book weaves together advice from over 40 families with hemophilia, and includes the latest research and knowledge to give you a guidebook through every stage of inhibitor management.

The book is authored by me and my friend and colleague Paul Clement, who also has a son with hemophilia. The idea for the book was born during the Novo Nordisk Consumer Council meeting of 2005, after I heard the anguish, the suffering and saw the tears of so may families with inhibitors. I couldn’t believe what I was hearing. It was as though inhibitors were a separate disorder. I didn’t know people with hemophilia still suffered like that in the US.

As you may know, an inhibitor is an antibody the blood makes, directed against factor VIII or IX. The body doesn’t recognize the infused factor as belonging to the body–it sees it as a foreign invader and mounts an attack. The body produces antibodies which latch on and neutralize the infused factor. It renders it useless, and the blood continues to bleed. Very scary.

I learned so much creating this book: about pain management, different protocols, and the different products. But most of all, the incredible strength of people with inhibitors and their families. They are truly heroic people. I hope the book is a testament to their courage, and also helps give guidance to families new to inhibitors, so they can learn from their peers, and find the best route to elimination or at least management of the inhibitor.

My thanks to Novo Nordisk, which gave us an unrestricted grant to research write and publish this book. Novo Nordisk is the manufacturer of NovoSeven® RT, a bypassing agent used in the treatment of acute bleeds in patients with hemophilia and inhibitors.

You can order the inhibitor book via our website at

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