Advocacy in Action: India

 While we celebrated our own Washington Days at
the end of February, and have been observing March as official Hemophilia
Awareness Month, India has long been a leader in hemophilia advocacy. With a
projected population of over 100,000 people with hemophilia, and only about
15,000 registered, people with hemophilia suffer and even die regularly in
India. India has been lobbying its government for years, and finally the
efforts are paying off, despite competition for attention from infectious
disease groups, high profile crime, and politics. It’s a miracle hemophilia is
noticed at all, unless you meet the people behind the advocacy. I’ve been able
to work with them via Project SHARE and Save One Life and they are smart, savvy
and know how to get things done.

  But progress is slow. Below is a recent article
about hemophilia care in the state of Maharashtra.

“Despite promises, 3,000 hemophiliacs in state
await medicines,”
by Ananya Banerjee 
Posted online: Mon Mar 04 2013, 05:25 hrs
Months after the Maharashtra government told the
Bombay High Court that it would provide free medicines to hemophilia patients;
the 3,000 registered hemophiliacs in the state are still awaiting the clotting
factors that are essential to any person suffering from the disease. Hemophilia
is a genetic disorder, which impairs the body’s ability to clot blood, thus
increasing the possibility of the patient bleeding to death.
 
Currently, the hematology center at KEM Hospital
gets the bulk of hemophilia patients, while a handful go to the other civic-run
Nair and Sion hospitals. The factors at KEM are purchased by the Hemophilia
Federation of India and disbursed at the centre.
“The government has made several promises to
support hemophilia patients, but next to nothing has materialized. The disease
is under-reported, especially in the rural areas. Many die due to lack of
access to treatment. Other states such as Assam, Uttar Pradesh and Madhya
Pradesh are giving free factors to patients,” said Dr Kanjaksha Ghosh, director
of the National Institute of Hematology.
Replacement of the factors VIII or IX, essential
for preventing continuous bleeding, cost a patient a minimum of Rs 9,000 ($165)
at one time. A severe hemophiliac may require as many as 1,50,000 units of
factor per year.
“The government has not made any move on providing
free factors to us. We have earmarked Rs 50,000 from the hospital budget to
treat haemophilia patients. This is, however, not enough,” said Dr Sandhya
Kamat, dean of KEM Hospital.
While the state currently has 3,000 recognized and
registered hemophilia patients and the city has 1,500.
The Haemophilia Society, Mumbai chapter, filed a
PIL in the Bombay High Court last year, demanding better treatment mechanism
for hemophiliacs and make treatment affordable and accessible. The matter is
still pending in court.
Meanwhile, the state, which launched its ambitious
healthcare scheme, Rajeev Gandhi Jeevandayee Arogya Yojana (RGJAY), last year,
has not managed to treat any hemophilia patient even after completing over
25,000 surgeries.
 “RGJAY
is not the appropriate model for hemophilia treatment. For every infusion, the
frequency of which may vary, a patient has to get admitted to the hospital and
wait for factors before the treatment can happen. This is a waste of resources
and the money, which the beneficiary is entitled to,” said Paresh Parmar,
secretary of the Haemophilia Society, Mumbai chapter.
Ashok Verma, founder of
Hemophilia Federation (India)
“What is required is setting up of centers across
the city and the state with trained staff and availability of clotting factors.
While the government has been assuring us these for a long time, nothing yet
has been done,” Parmar said.
I’ve been to KEM Hospital and know the Haemophilia
Society, Mumbai Chapter. They are miracle workers, helping hemophilia patients
with so few resources. Project SHARE is proud to continue to offer factor when
possible, while the local chapters and the national Hemophilia Federation (India)
continues to lobby the government for support. We wish them continued success.

Pulse on the Road: Albany!

Laurie presents 

 We had a wonderful visit to Albany, to meet members of the New York Coalition of hemophilia organizations. Bob Graham, person with hemophilia, helped facilitate our invitation and arrival and welcomed us Sunday, March 10. It was a small gathering of families and some clinicians, who eagerly drank in all the insurance information we presented.

 Kelly Fitzgerald, associate director of government relations at Patient Services Inc. (PSI) gave everyone a 45-minute update on the Affordable Care Act. Key take-aways include:

• In 2014, everyone must have health insurance
• You may need to select your insurance in a “marketplace”
• You must read your insurance policy annually and carefully!

When is your open enrollment date?

I then gave a talk called “The Importance of Choosing a Healthcare Plan,” infused with humorous stories of my own son’s struggle with insurance (hint: good idea to have your insurance and medical mail forwarded from mom’s house to your place over a pizza shop!) and stressing that you must pay attention to open enrollment dates. Do you know yours??

Michelle Rice of NHF

Michelle Rice, public policy director of NHF, then gave her acclaimed one hour workshop on the NHF Insurance Toolkit. We passed out workbooks and calculators and I was so impressed by the audience’s dedication! Even the teens were busy crunching numbers to see how “John Doe”‘s medical expenses add up when comparing two plans.

Zoraida Rosado, who pulled
everything together!

And finally, we had a 30 minute expert panel, so the audience could ask questions of the speakers. I learned a lot. One nurse in the audience offered this excellent piece of advice: when using medical services, instead of asking “Do you accept this insurance?” instead ask, “Are you in network with this insurance plan”? This pointed question could save you so many hassles, time and paperwork!

Teens were even crunching numbers!

Families engaged in NHF’s Insurance Toolkit

Thanks to Bob Graham, the New York Coalition, my team, our guest speakers, and all the families who attended. Deepest gratitude to Baxter Healthcare Corporation for sponsoring Pulse on the Road. For more information about health care reform, visit:

•www.healthcare.gov
•www.patientservicesinc.org
•www.hemophilia.org
•www.hemophiliafed.org 

A Father’s Pursuit of Justice

After spending three incredible, wonderful days in Washington DC with our amazing community, it seems the right time to mention this unique book: Vial 023: A Father’s Pursuit
of Justice
by Gary William Cross.

This is a poignant tale of parents who struggle raising a wonderful boy with hemophilia in the 1970s, only to learn later he has contract HIV. When their son eventually dies, the Crosses join forces with other advocates and activists to sue the pharmaceutical companies for negligence, and bring some sort of peace and truce to a fractured and angry community.

There have been many books written about the HIV scandal, most notably Blood by Douglas Starr, and And the Band Played On by Randy Shilts. There have been memoirs of loved ones who have died. But to date no one has told the story of how a select few in the hemophilia community brought down the rigid armor of big pharma, against all odds, while still mourning the loss of their sons, husbands and relatives.

The story is a memorial in many ways to Brad Cross, born on April 30, 1975 in Baton Rouge, Louisiana. Gary, his father, knew that wife Karen and her two sisters were carriers of
hemophilia.

Because of this, the parents suspected, and it was confirmed right away, that Brad had hemophilia. He was not circumcised but his heel prick bled. He was first infused with factor VIII concentrate at the six
months for a bilateral hernia surgery. By age 5, hemophilia seemed under control. The Crosses were excellent parents: Brad received treatment at the hemophilia treatment center at
Tulane University in New Orleans. Both parents worked to ensure two health insurance policies to cover mounting costs. The
family belonged to the Louisiana chapter of the
National Hemophilia Foundation.

When HIV was reported in certain groups of people, and suspected to be in the blood supply in 1985, Brad asked his HTC
hematologist point-blank whether he had AIDS. His physician did not answer, but later
informed Gary that Brad was HIV positive. The HTC had anonymously tested Brad’s
blood, and labeled the vial “Vial 023.” As the disease became full blown, Brad suffered seizures
and a gradual mental deterioration, losing
his speech and his ability to walk.

The narrative of the parents’ love for their son is gripping and evocative. It is a powerful testament to their love for Brad as well as their desire to not have others hurt that the Crosses helped to
initiate in 1991 a class-action lawsuit against four pharmaceutical providers
of the factor concentrate–Alpha, Armour, Baxter, and Bayer–a legal process
that would last 10 years and eventually include 124 families. The Crosses lost almost everything, including hope, but stayed the course, and in the end were victorious.

But not with Brad; he died at home
on April 16, 1993 just days short of his eighteenth birthday. The pharmaceutical
companies offered compensation of $100,000 to each HIV-infected individual with
hemophilia, but some opted for the class-action suit. Gary, a man with high principles, finally received personal apologies from the pharmaceutical CEOs. 

As the mother of a child with hemophilia who has dedicated her life to helping this community, I believe this is a vital story to the hemophilia community’s unique and tragic past, and is a model of advocacy: what one man can do to change the world. Everyone should read it.

As an editor and author I would be remiss if I didn’t, however, point out some problems with the book itself. Expect an amazing story; don’t expect great writing. The text suffers from lack of good editing. There are typos, misspellings of names, and incorrect or incomplete medical and scientific terms. Some of the phrases are quaint and a throw-back to the 1950s. Some will make you cringe as politically or culturally inappropriate. Nothing is documented or footnoted; on page 114 Gary asserts that the four pharmaceuticals never spoke with each other as they were trying to control market share, perhaps not realizing that legally these companies cannot speak with one another due to anti-trust laws.

I recommend trying to overlook these and focus on the story. It is remarkable and Gary Cross is a modern day hero, as are the men and women who fought beside him, many of whom were at Washington Days last week, still fighting the good fight for the future of our children with bleeding disorders.

Gary and his wife, now
retired, continue to serve their community as volunteers and fund-raisers. You can meet them at hemophilia events. Gary serves as chair of the board of Patient Services, Inc. (PSI), which provides insurance premium assistance to families with chronic disorders.

The book is available at Amazon.com. 151 pages, published by Kudu. 2012

The Power of the Common Person: NHF’s Washington Days

Laurie Kelley with Debbi Adamkin,
 executive director of Florida chapter,
mother of a child with hemophilia (and dear friend!)

Don’t be nervous!
Ellen Riker told the attentive audience of first-timers at NHF’s Washington
Days on Wednesday, February 27. I was thrilled to be among the first-timers.
And I took a lot of heat for that. For all I have traveled the world, and been
involved with our community for about 24 years, I have never attended
Washington Days! I’m usually in a developing country, as winter provides mild
temperatures overseas. But now, I’m hooked on Washington Days and can guarantee
I’ll be back.

We are blessed to have
Ellen Riker on our side!

Washington Days originally began by HTCs in the 1970s, to
secure more funding. Many of their services were not billable to insurance,
like those for social services and physical therapy. Soon, National Hemophilia
Foundation (NHF) and the HTCs joined forces to help advocate for the HTC
comprehensive care model and in 1975, successfully secured funding. Now, groups
of patients and families with hemophilia come from all states to meet with
their representative and senators to speak with one voice about securing
funding and preserving care. This year? The largest turnout yet with over 340
people ready to lobby, from nine-year-old Peyton Brush of Texas, who has
hemophilia, to, well, people in my
age group!

NEHA ready to lobby!

The next speaker, Joanna Gray, told us “You’ll never be
alone when you lobby.” I originally thought we had to meet with our reps solo! But
we would go as a regional or state group. “And meeting with the staff is more
important than meeting with a senator.” I looked at my agenda and we would have
seven meetings in seven hours on Capitol Hill!

The next speaker Wednesday night was Travis Albright, an
articulate young man from Michigan who serves as an aide for representative Gary
Peters. He advised, “Lobbying can be intimidating, but you are the most important person there. You have a story to tell.
I would prepare facts and figures when I would lobby, but the [hemophilia] camp
stories I told made the biggest impression. Every representative in the House
represents 600,000 people. You represent your community, which is small. You
have awesome power to speak for everyone.”
Laurie Kelley: first time lobbyist!

And Michelle Rice, director of public policy at NHF, stunned
us by saying “We have 220 visits scheduled for tomorrow!”

I have met with Prime Ministers, Health Ministers and even
many celebrities. No problem. But I have never once met with my representatives
or senators, and I was feeling nervous! All the speakers put me at ease, and it
helped to know I was going with my local group, New England Hemophilia Association
(NEHA), an experienced lobby group.
That night we gathered in the Marriott lobby bar to greet
old friends, meet new ones, laugh and get ready for the big day.
Laurie Kelley with Jose de la Riva,
chair of NHF, father of son with
hemophilia

On Thursday the weather was sunny and brisk. You can do a
lot of running around on Capitol Hill trying to meet with your representatives.
We rehearsed how we would all present our two main concerns: Kevin Sorge,
executive director of NEHA, would introduce us and outline why we were here: 1)
To maintain the $4.9 million level of funding for HTCs from HRSA, and 2) to
request co-sponsorship of H.R. 460, the Patient Access to Treatments Act, and
more superficially, to keep hemophilia drugs from becoming tier 4 reimbursable.
As tier 4 drugs, the co-pays would be outrageously high, with patients required
to pay 25-33% of total costs, truly unaffordable for anyone. This could lead to
abandoning prophylaxis and not allowing out children to do sports or travel.

NEHA meeting with Jim Gordon of rep. Stephen Lynch
Nothing stops these guys from lobbying!

Then I would give a quick rundown on Hemophilia 101. Showing
my photos of children overseas with swollen joints or head bleeds really drove
home how treacherous hemophilia can be. Then, Greg Price, who has hemophilia, would
discuss HTCs, and share his own personal perspective on them. Diane Lima,
mother of Jonathan and Andy, would share her experiences with insurance costs and
the boys’ quality of life. She created very effective laminated cards on each
boy that were teaching tools for the high cost of care. She left behind copies
for each representative. Ian Muir, another person with hemophilia, also shared his
personal story. Finally Kim DeAngelis, Ph.D., board member,
summarized beautifully the main points and what we needed from the
representative. It all went like clockwork!

We had excellent meetings. We noted that some of the representatives’
aides were more observant, some were extremely engaged, some chatted about their
own experiences in healthcare system, but all expressed an interest in supporting
our causes. We can’t say definitely, but I think we scored a couple of co-sponsorships
for H.R. 460! I was deeply impressed by the mostly young aides: how
intelligent, poised and responsive they all were.
Mother Diane Lima explains
healthcare costs for hemophilia

It was an intense and long day. Lunch in the Capitol was
hectic, crowded and noisy. Decorated generals huddled in talks next to chatty
tables of young people. Our feet were tired and eyesight blurry by the time we were
done. We had a wonderful dinner, more speakers and then back to the bar to
complete evaluations and follow up items. Thank you emails or notes are vital.
I would be sending out copies of my book Raising a Child With Hemophilia to
each person we visited.

Laurie Kelley with NHF CEO Val Bias

I cannot praise NHF enough for their fantastic organization
of this event. It went without a hitch, and everyone worked hard and yet had a
great time. I’m hooked. I’ll be back next year. And I’ll be watching the
political fallout of the budget deficit management much more carefully, now
that I’ve dipped my toe into the political waters of hemophilia reimbursement.

NEHA meetings Joe Kennedy III

To see all the photos, go to http://lakelley.smugmug.com/Events/Washington-Days

Great job NHF!

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