Dying in Vein on Easter

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Today is Easter, a time of transition; in faith, celebrating the death and resurrection of Jesus, in weather, a celebration of spring in the Northeast. It’s a time to watch the dying of winter and the coming of new life. It’s also the end of Hemophilia Awareness Month, and I want to close this special month by reading and sharing the book Dying in Vein: Blood, Deception … Justice, by Kathy Steward MacKay.

The thoughts of those who died in our Hemophilia Holocaust are never far from me; I keep photos of my friends who passed in framed photos on my bookcase at home. They’ve been there for 18 years in some cases: Michael Davon, Tom Fahey (both from the Boston area), and Dave Madeiros. I suppose this is why I was so drawn to Kathy’s book. It’s a photojournal of stories of those with hemophilia who contacted HIV. You can read it in an hour, but the photos and stories will stay with you forever.

My library of hemophilia
Holocaust books

I think this is why I keep framed photos of my departed friends; they are always there to look at, when I walk by them. But sometimes, like anything you see every day, they fade into the background, and become part of the surroundings. You don’t notice them much; you take them for granted. I do it to my photos; we all do it to the HIV community. Yes, many of those in Kathy’s book have passed on, but many are still here, struggling. We tend to forget about them, as the community is enjoying a new era in health and quality of life, but Barry Haarde’s shocking passing in February is a stark reminder that they still suffer, still carry wounds and stigma, still need us to remember them.

Remembering: Tom, Mike, Dave

Dying in Vein is beautifully written, and exquisitely photographed. Kathy is a professional photographer, and captures searing emotions and tender scenes in her book. Black and white photos are extremely powerful when done right, and render the families, the emotions, the turbulent times like a classic movie before there was color, like a work of art, and even with a nod to the purpose, which itself seems black and white: Something bad happened to good people. The book whispers “Never forget,” which is the phrase that greets you when you enter the Dachau concentration camp in Germany. Never forget.

Too young to die

I loved the portrayal of Tom Fahey, co-founder of the Committee of Ten Thousand (COTT). I knew Tom personally and attended his funeral. I was able to speak with him on numerous occasions to learn more about what it was like to have hemophilia and HIV, to understand his mission to bring justice to those who contracted HIV through their actor. Tom was not militant; he was a gentle giant, as the photos accurately captured. He sympathized with me, a young mom at the time, trying to understand the devastating disease that my own son narrowly escaped. I sympathized with him in his mission.

The story of Robbie Johnson was heartbreaking; such a lovely young man, who adored music and his mother. He shot himself in the head at age 22, when he learned that despite all the pain he had suffered, things would get worse. He reached his end. I wonder how many of our guys today are suffering this same agony. Robbie’s photo is on the cover of the book.

Bryan Clark

And Bryan Clark… the updated book did not update that Bryan has passed in 2009. I only know this due to an exquisite story about Bryan. I was bound that year for the Dominican Hemophilia Camp that I helped to found. But the camp almost never happened; you cannot have a camp with 50 boys with hemophilia and no factor. We almost cancelled camp. Where would we get all the factor we needed? Then a phone call. Bryan’s mother, who asked if she could donate her son’s factor to Project SHARE; he had died. The Clarks had never been on my mailing list; I guess they found me through their HTC. I never heard of them They donated the factor, and I took it with me to the Dominican Republic camp that year.  I shared with the boys how special this factor was, as it was given by a family whose son with hemophilia had died. How this donation permitted all the boys to enjoy camp. And these are boys who are very poor; camp means everything to them! Later at camp, all the boys made cards for the family to express their thanks. The theme of the camp was metamorphosis, represented by a mariposa, butterfly… to show the boys how camp will help transform them. The boys all drew butterflies on their cards. Weeks after I returned from camp, I heard from Bryan’s mother, who was shocked. Bryan loved butterflies… how did I know, she wanted to know?

Tom and Fran Fahey

We are all interconnected in the hemophilia family, in good times and bad. In sickness and health. Our past, their past, is as much a part of us as our future together. While we our community continues to go through a metamorphosis, like Easter, like spring, Kathy’s book Dying in Vein takes a snapshot of a time in history that we must never, ever forget, and we must honor. Perhaps March, or Easter, or spring, is that time to do that.

Order Dying in Vein here. 

Boots on the Ground: NHF’s 67th Annual Meeting

At least something
at the Dallas meeting was older than me—the NHF! This is my 24th
year of attending NHF meetings and I was thrilled to catch up with so many
colleagues and friends. 


Kim C. and John Urgo
of RUSH, with Zoraida
“Boots on the Ground” refers, I think, to our
exceptional advocacy work, a history of which I liken to the Big Bang theory. At
one time there was darkness out of which an explosion heard around the universe
occurred, and new stars were born. The darkness, of course, was the HIV era,
the “holocaust” in the words of many, when half our already small community was
decimated by contaminants in the nation’s blood supply and blood-products used
for clotting blood. The Big Bang was the outcry from patients, who formed
groups like the Committee of Ten Thousand, and later Hemophilia Federation of
America, to take on corporate America and the government of the United States
itself. These people—Corey Dubin, Dana Kuhn, Tom Fahey, Val Bias and more—were
our stars, emerging through that dark time. Many of our stars have burned out, passed
away, but many still burn bright.
Laurie Kelley with Texas hemophilia friends Andy Matthews
and the famous Barry Haarde!
They’ve now harnessed all that energy,
knowledge and power and shine it on industry and insurance companies,
protecting our need for safe products, available products and access to all
products. And with them are hundreds of families who have joined that cause.
To remind us all of where our advocacy comes
from, NHF spotlighted Ryan White, one of our community’s first advocate,
certainly our first child advocate. An Indiana native, Ryan won the right for
all children to attend school who had hemophilia and AIDS; his mother Jean
White was interviewed and I think we all had tears, when she teared up. There
are not enough words to express how courageous that boy was.
NHF Chair Jorge de la Riva gave an
impassioned speech that praised the efforts of all our community to stand up
and protect our needs and rights. He also challenged us all to look deep within
to ask What more can we do? Can I do? We can all do something.
NHF CEO Val Bias’ speech stood out for his
challenge to include the fringe members of our community, especially women with
bleeding disorders (who are really not just carriers), inhibitor families and
those with rare bleeding disorders, like factor XIII. Indeed, he called out to
those members to stand and be welcomed, and the audience exploded into applause
when an entire row arose.
I would add to that the LGBT community, which
has existed quietly. And yet they are some of our greatest activists. Don’t know
what LGBT stands for? It’s time to look it up, and get to know them.
Someone older than me? Joe Pugliese,
my oldest friend in hemophilia
Pharmacokinetic testing was a hot topic: how
does your child react to infused factor, especially if he is on prophy? Only
one way to learn how quickly the factor fades over time from his body. Not
every child can be prescribed a three-times-a-week, Monday/Wednesday/Friday
prophy regimen. Running a blood test consecutively over a few days to test his
levels will reveal how quickly factor is used up—in other words, what’s his
unique half-life? This topic dovetails perfectly with the release of our
one-time newsletter YOU, arriving in your mailbox soon! It’s all about your
child or loved one with hemophilia’s unique needs, including his or her
particular half-life, so vital to know.
One huge change I noticed? Years ago,
specialty pharmacies and homecare companies dominated the exhibit hall floors,
with stuffed bulls to ride and take a photo with) and even once a huge pirate
ship (remember the pirate ship anyone?). These companies outdid each other in a
bid to get potential consumers to their Vegas-style booths. Now, they have
shrunken to little booths on the periphery, while the megabooths and choice
space goes to pharma. Why? Specialty pharmacies have consolidated into a few
monster, dominant entities. They don’t have to compete for business anymore;
they own us. Pharma on the other hand, is competing fiercely for your attention
with a glutted pipeline of products in clinical studies. Prepare for lots of
pharma advertising in the new year.
Please go on line and read up on the
three-day annual event, which brought treatment staff from HTCs, consumers,
nonprofits, manufacturers and homecare companies all together for hours of
learning and connection. Congratulations, NHF, on another successful year!
Keep  these boots on the ground,
with sharp spurs.
 
More photos from the event to come!
Good Book I Just Read
How to Love [Kindle]
Thich Nhat Hanh
Short essays on the nature of love, peace and
how to find these traits within so you can better  encourage the transfer of these to others in need. Like all
Hanh’s books, it is easy to read and leaves you feeling more tranquil and
loving. Three/five stars.

United by Blood: HFA Meeting in Tampa

Laurie Kelley, Jeff Johnson, Barry Haarde

Grey skies and a chilly breeze couldn’t dampen the spirits of those attending the 20th anniversary meeting of Hemophilia Federation of America in Tampa, Florida this past week. A record number attended, estimated between 600-900, from all parts of the US. Zoraida and I arrived on Wednesday, a day early, to meet with some of our colleagues, for this is a prime meeting for business networking, fundraising and brainstorming.

Central to the meeting, like its heart beat, was the History Room. This stunning display of our past 70 years in all its pain and triumph, was a somber reminder of how far we have come in the war against bleeding, and the sacrifices of our fallen. Following a poster timeline, in which each era was clearly defined, led to the room, where dozens of resources were provided (hey, including my own stuff), a community poster board with hundreds of photos, and the Ryan White section from the AIDS Quilt. Kudos to Rich Pezzillo, Ray Datolli and Barry Haarde (and their helpers) who masterfully compiled with painstaking detail this amazing tribute to our community, to our fallen.

Selfie-time!

Symposia included a variety of topics. One on advocacy and the ACA, called Making Advocacy Personal, featured Jim Romano of PSI and Wendy Owen who answered a slew of questions on advocacy and health care policy. Another on just inhibitors, a new feature at HFA–my only concern was that is was closed only to families with inhibitors. Huh? Everyone could benefit from attending, as there will be families this year who will develop inhibitors, and there are those of us who help educate them. (Anyone want to explain that policy to me?***)

Baxter-Sponsored Dinner Friday Night

A Baxter-sponsored dinner Friday night provided talks from two young men with hemophilia who shared their stories of growing up feeling different, and who now are talking life by the horns–very inspirational!

Ray Datolli, Emily Haarde, Rich Pezzillo,
Laurie Kelley

After that dinner, at 9 pm, I attended the Committee of Ten Thousand (COTT) meeting, led by the legendary Corey Dubin. We discussed the Living Memorial, a gorgeous “Vietnam Wall” style, stone memorial, to be placed in San Francisco, with the names of all who died of hemophilia/HIV inscribed on it. The artist’s rendition is spectacular, and prompted Jane Cavanaugh Smith, executive director of the Coluburn-Keenan Foundation to donate $10,000! And to pledge matching donations up to $50,000! Nathan and Sonji Wilkes, parents of Thomas, who has hemophilia and inhibitors, immediately pledged $1,000. Corey was touched and grateful, and we all look forward to learning more about the Memorial’s fundraising and financing so we can begin to help fund this, and at long last, close the wound in our community while the survivors are still with us.

The final night was a wonderful buffet dinner sponsored by Biogen Idec, complete with games for the kids and dancing. And what timing. That very day it was announced on the newswires that Alprolix, Biogen Idec’s long-lasting recombinant factor IX, was approved for sale by the US FDA!

So in addition to congratulating HFA on 20 years of service, Biogen Idec also announced to the crowd the news about this game-changing drug. And don’t forget there are many other drugs in the pipeline coming on line soon from many of the manufacturers….

It’s going to be an interesting year, folks.
Thanks to Kimberly Haugstad and her team for a fabulous meeting!

*** Policy explained, April 1 from HFA: “We closed it because inhibitor families asked for it to be closed.”

History Room: 1950s…

History Room: 1950s…

Why Should We Care?

Laurie Kelley and Guy Law: Friends for 20+ years!

AIDS Quilt

Andy Matthews and Laurei Kelley: friends for 20+ years

Laurie Kelley and Sarah Workman

John Parler and Laurie Kelley
Laurie Kelley meets author Shelby Smoak
Julie Heinrich and Laurie Kelley
Laurie Kelley and Juanita Fish!

Dawn Rotellini of NHF!

Sunday morning: EJ, Matt and Jeff
Zoraida and…
… Laurie at the Dali Museum

COTT: Working to keep us safe

I just received another issue of the COTT Washington Update, Vol. 11 No. 1. It’s one of the most intelligent reads you can get in the hemophilia community. COTT of course is the Committee of Ten Thousand, a national nonprofit that was formed in response to the HIV infections of the 80s. It helped to bring closure and settlement to the community affected by HIV. But its work wasn’t done then; it has since become our nation’s watchdog for the blood supply.

Below is just a quick sample of what’s in the Update. Note the scope of topics, the relevance to hemophilia, the timeliness of it:

1. …the unexpected withdrawal of Tom Daschle, the White House candidate for Secretary of Health and Human Services, [was a setback to health reform] who was to have also directed the Office on Health Care Reform in the White House.

2. The current economic stimulus bill drafted by the House Democratic majority includes an $80 billion for Medicaid, the same for education, and smaller amounts for unemployment insurance, COBRA costs, law enforcement, military construction and homeland security.

3. A disturbing part of the Stimulus bill language was proposed, in a section supporting outcomes- or evidence-based medical research, being called ‘comparative effectiveness’ when applied to pharmaceuticals, biologics, and medical devices. The language allowed government bodies such as the National Institutes of Health to convene expert panels to review results of such studies, and in effect endorse the winners – only those most effective – with dire ramifications for others. The problem is that cost is factored into such rankings, and while as we know new products from fractionators increase safety, they may not currently reflect improvements in cost-effectiveness. Moreover, should a panel select one brand of factor over others, there is no built-in assurance as yet that the need for all factor products to be available to all patients would be guaranteed. Alerted to this by the fractionators’ association, PPTA, COTT and others wrote to relevant committee chairs in the Senate to soften this language.

4. Vermont: The Health Department office operating the Medicaid program in Vermont contracted for hemophilia pharmacy effective November 1. Although the regional and national associations were not aware of this plan until less than a week before, HTCs in the state were contacted in advance. The regional association convened a number of input conference calls, and COTT as well as others urged that the MASAC-approved Standards of Service document be shared with that office, and that Vermont be asked to respond whether its terms were met in the contract.

5. New York: The state Medicaid office has announced contracts for hemophilia pharmacy – multiple contracts, so concern about the sole sourcing actions in other states is not present, however the process exempts 340b HTCs (Hemophilia Treatment Centers which sell factor). Thus, those currently using one of the state’s centers can continue there; those in more rural areas must however subscribe to one or the other of the state’s new contractors, regardless of whatever more hemophilia-focused pharmacies they have been using.

6. The Advisory Committee on Blood Safety and Availability met in December. The only topic of discussion was “The Responsibility of Blood and Plasma Centers to Donor and Public Health.” In COTT testimony we pointed out that conspicuously omitted from these concerns was recipient health… perhaps because the blood banking community has no direct contact with recipients but can track and work to improve care provided to, and health of, their donors.

7. Wellpoint has continued to expand the number of states in which its for-profit subsidiary payers (Blue Cross) require clients with hemophilia to use either an HTC or its own mail-order pharmacy in Indiana; the total now stands at 10 of their 14 states.

This is just a sample of the breathtaking information and vast scope of COTT’s activities. The volunteers and committee members work hard to stay on top of anything related to blood safety. While many in the community use recombinant products and think this doesn’t apply to them, COTT also monitors all activities regarding hemophilia business, such as the narrowing of choice, forced homecare switching, and research.

This summer marks COTT’s 20th year. It’s planning the construction of an AIDS/Hemophilia memorial, and the celebration of COTT’s 20th Anniversary this summer with an event in Washington.

COTT writes: “Out of the ashes of the devastation of 10,000 lives emerged a grassroots advocacy group that has brought the hemophilia community a federal advisory committee now in its 12th year, a $600 million relief bill, and plans for a national blood policy, maximizing blood safety well into the 21st century.”

Please subscribe to this important newsletter, for your child’s future and current health safety.

www.cott1.org

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.’ “