Sunday, March 31, 2013
Sunday, March 24, 2013
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
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.
“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.
Monday, March 18, 2013
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!
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:
Sunday, March 10, 2013
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
Sunday, March 03, 2013
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.”
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.
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.
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.
©2017 LA Kelley Communications, Inc. All Rights Reserved. Terms under which this service is provided to you. Read our privacy guidelines.