Anyone who knows me, knows I care deeply for patients with bleeding disorders in developing countries. I’ve been trying since
1996 to create ways to get factor concentrates to them, from simply shipping it
through Project SHARE, to helping start patient nonprofits in other countries
in order to ship more factor.
So whenever I hear of stories like the one I’m
about to share, I get very excited, and deeply grateful. I know so many children
whose lives have been forever changed by simply getting factor. It’s a miracle
drug, and needed by so many.
Bayer announced last week that it is entering into a five-year
partnership with the World Federation of Hemophilia (WFH) to bring education,
training, and Bayer’s full portfolio of recombinant factor VIII (rFVIII)
treatments to healthcare professionals in more than 60 countries where access
to care is limited. Yes!
part of the agreement, Bayer will provide financial assistance to support the
training and education of healthcare professionals on the accurate and safe
administration of treatments. WFH has local partner organizations through which
they distribute the donation and manage logistics.
expanded WFH Humanitarian Aid Program seeks to improve the lack of access to
care and treatment by providing much needed support for people with inherited
bleeding disorders in developing countries. As we all know all too well,
providing patients with a more predictable and sustainable flow of humanitarian
aid donations is critical, and the WFH Humanitarian Aid Program makes it
possible for patients to receive consistent and reliable access to treatment
In particular, Bayer will donate 50 million IU
of factor VIII treatment in 2019. Factor VIII treatment donation will support
up to 5,000 people living with hemophilia A in countries with insufficient
access to care.
I’ve been to over 30 developing countries,
some of them up to four times, and know many patients. I am thrilled to hear
this news; it’s bold, it’s needed and it’s time. People with hemophilia continue
to die. We can prevent that, and give them a chance at life, which they so
deserve. Kudos, Bayer!
Footnote: In 1996, a rep from Bayer approached me to create and run a leadership program in developing countries to encourage parents and patients to start their own nonprofits and advocate for change. Project SHARE grew out of this program, and we continue today independently to provide leadership training, financial assistance and product.
At the airport, Masood Fareed Malik and his wife Sehar were waiting outside in the cool, dry air. I first met Masood, now 35, when he was 17! It was great to be here again. I love Lahore, a wide city, more lush and dry than Karachi, with a high population of 11 million. I first visited in 1999, when the Pakistan Hemophilia Patient Welfare Society (PHPWS) was only two years old, and the Lahore chapter was in its infancy.
Laurie Kelley with Dr. Shahla (L) and Sister Margaret
On Friday, December 1 we went to the chapter office, which is jam-packed with shelves, resources, refrigerators and people. One room is an administration room, the other is the factor/infusion room, which completely impressed me. It has a security camera mounted on the wall. The seven fridges are broken down by purpose of the donation, including “NMO” only (national member organization of the WFH, so this means donations from the WFH and most likely, Eloctate and Alprolix); “prophy” (also from the Bioverativ donation); “Other” (VWF and bypassing agents). Their on-line registry is better than anything I’ve ever seen! This chapter is a model of management, efficiency and transparency. And when I visited in 1999, the first thing I asked was what their goals were. They had none, and no vision, no registry, nothing! Now—supermodel for the world.
Several patients were there to get infusions; they are not charged money but are encouraged to donate something to the chapter. They have over 650 registered patients, and their leadership is outstanding. These young men—Faizan, Adil, Masood, Rauf, Farooq—are exceptional! Adil was the young teen I visited back in 2007 at his home; Patrick Schmidt, CEO of FFF Enterprises bought him a computer at my request, and now he does data entry for the chapter among other things, is over 6 ft. tall, married with a baby!
Kashi with his first gori
Saturday December 2, 2017was a huge community event at the Children’s Library in Lahore, sponsored by a grant from the Novo Nordisk Haemophilia Foundation. As I got into the car, Masood pointed out Kashi, a young boy with a sly smile, who was helping him. Masood told me that Kashi has never seen a “gori” before—a white person. So, I acted a bit silly with him, got him smiling and we took a selfie!
Many patients were already there waiting. I like to make it a point to greet the audience, to break the ice, so I walked about, shaking hands, smiling, saying assalam-u-alaikum to all the families. I noted that in general men sat on the left, women on the right.
The ceremony took most of the day. There were speeches, awards, and I gave my talk and shared the successes of Save One Life. I handed out the Save One Life distribution funds for all the beneficiaries. Much of the day was a photo op. The press was present, and we had four back-to-back interviews for TV. Many of the young men, even the reporters, wanted selfies! One nice touch was the stand Masood made in my honor, with his photo: “Many years back your words inspired me. I am empowered today! Thanks, Laurie” That was sweet! Masood has become quite the national leader for hemophilia in Pakistan.
Some takeaways: Masood said, “You [with hemophilia] think you have been cursed but you have been blessed. Because you are special. God only gives burdens to those he thinks are special, worthy, strong. This is from the Koran.” One fact of note is that there is a high incidence of rare factor deficiencies due to family intermarriages. It is quite common for first cousins to marry.
Finally, after this long day, we still decided to visit families in their homes!
First, we drove to the house of ten-year-old Momina, who has VWD type 3, and who wants to be a doctor. We discovered on this trip that has a baby brother Alyan who also has VWD—he’s not registered with Save One Life so we will get him registered now. They live in a concrete home, with extended family, very typical in Pakistan. They live on the base floor, and have a tiny kitchen with a cloth covering the door, 1 bedroom for everyone, a motorbike in the hallway. They have a small flat screen TV and fan, all in the sitting room, which was very small. The father earns 1,500 rupees a month ($150) and spends 1,200 on school. School is a necessity for kids with bleeding disorders but public schools can be dangerous: there are bullies, and some teachers cane the children.
Outside, in the enveloping dark, neighborhood children played in the dirt with toy camels and donkeys and colored chalk, celebrating the life of the prophet Mohammad. Yesterday was his birthday.
On we drove to visit Saida, who we saw at the ceremony today. A pretty 19-year-old girl with VWD type 3, petite and quiet. She is on the Womens Group committee. Her father is a car mechanic, but lost his job (Masood didn’t know that and was genuinely surprised and concerned). She’s waiting to be accepted to nursing school. And she tutors about 20 kids after school to make ends meet. They live in a family home, which is rundown, with plaster chipped off the wall. I gave her father $200 to help them out while he is out of a job.
In the afternoon of Monday December 4, 2017, we attended an Art Gallery presentation of photos of hemophilia, in an art show called “Reality Clicks,” a project again sponsored by the Novo Nordisk Haemophilia Foundation. The photographer was none other than Masood’s brother Bilal. The photos, displayed around the entire circular room, showed patients in various situations: in pain, with one another, at work. The press arrived in force again, and interviewed Bilel, Masood, and Dr. Shahla. The entire project helps to promote hemophilia awareness nationally.
I’ll never forget what one young man with hemophilia, Haroun, said: “I felt God never blessed me. I compared myself to normal people. I had anxiety attacks. But then I joined the PHPWS. I experienced my own community at last and found that I was actually better off than many of the patients. So I was wrong to compare myself to normal people.”
We had a lovely time, and afterwards, went to Masood’s father’s house, where they all live, to have “high tea.” A snack to them, which to me is as grand a meal as I have ever had!
On Tuesday December 5, 2017 I attended all day the Annual General Meeting of the national hemophilia organization at the Shalimar Hotel. Saeed ul Hassangave an excellent presentation on the patient registry, and mapped out where patients were. He said their registry was recognized as a success story by the WFH, and I can clearly see why. Now in 2017 they have 1,850 registered. They use this registry for organization elections, like an electoral college. 1 vote per 50 patients. With the registry they found that 40.7% of their patients have joint deformities and 92.6% were not tested for HIV.
Pakistan has four provinces: Khyber Pakhtunkhwa Province (KPK), Punjab, Sindh and Baluchistan. The tribal belt adjoining KPK is managed by the Federal Government and is named FATA i.e., Federally Administered Tribal Areas. What was truly awesome was that at this meeting, I met patients from FATA, a place that has me intrigued.
Syed Shabistan is a teacher, tall, with incredibly straight white teeth, impeccable English and from Peshawar. Peshawar is the capital of KPK, and serves as the administrative center and economic hub for FATA. Peshawar’s recorded history dates back to 539 BC, making it one of the oldest cities in Pakistan. Its economy has benefited in times past from being at the entrance to the Khyber Pass, the ancient travel route for trade between Central Asia and the Indian Subcontinent. Think of all the tea and spices that traversed this!
Syed was only diagnosed at age 23. There they speak Pashto. With him was Tahir Oman, the VP, and person with hemophilia, and Faheem, who also has hemophilia. On June 2013 Peshawar became operational as a chapter and already they identified 335 patients. How different this area is from Karachi and Lahore: its has been negatively impacted from the rise in global violence and is economically depressed. Syed told me there is a great need for help from programs like Save One Life.
This meeting showcased Pakistan’s excellent progress in hemophilia. The country still needs to identify the remaining 17,000 or so people with hemophilia, but is on its way to do so. Pakistan has among the best doctors in the world, and while lacking some resources, is making headway. Donations of factor will not last forever, but it gives everyone motivation and has allowed patients to be on prophy for the first time in history! Thanks to Bioverativ and WFH.
Best, of all, Save One Life is being implemented perfectly in the country, with all three program partners. My happiest moment, besides meeting our beneficiaries in their homes, was knowing that we can focus next year on Peshawar, knowing we have these three skilled men with hemophilia to help us.
We made plans for me to visit Peshawar next year, inshallah!
Friday was World Hemophilia Day, celebrated in honor of the birth date of Frank Schnabel, the founder of the World Federation of Hemophilia, based in Montreal, Canada.
All across the globe hemophilia organizations arranged to have famous landmarks lit up in red at night in solidarity. As well, many people in various companies and nonprofits wore red, as a sign of solidarity.
I was asked to speak to employees at the new Novo Nordisk plant in Lebanon, New Hampshire, where the new product Novoeight, is being made. It was a lovely two hour ride from my home in Massachusetts. I had a quick tour of the new plant by none other than Scott Evangelos, a process scientist, but also a friend for 30 years, who ironically just happens to have been hired last September by Novo Nordisk. Not only is he a family friend, but his wife Sara, has been my editor for 20 years. All the things you read from us, from books to newsletters, have been vastly improved by her gifted skills in editing.
WHD in Tunisia
I spoke about hemophilia, its complication, treatment and of course inhibitors, as Novo Nordisk makes an inhibitor drug, Novo Seven RT. Half of my talk was dedicated to the 75% of our community which lacks treatment, and I shared slides of some of the families I have met on my journeys.
WHD in Pakistan
WHD in Seattle!
Unlike everyone there, who all wore read, I wore white, to show my solidarity for those who do not get treatment. Due to company policy, I was unable to take photos! It was a lovely event, and I hope the employees have a better sense of our community, and their new role in it. It was a pleasure to tell them “Welcome to our community,” for they belong as well as the patients.
Thanks to Sue Clark for arranging this great event!
Great Book I am Reading Stiff: The Curious Lives of Human Cadavers [Kindle] by Mary Roach
Mary Roach has done it again. Taken an offbeat topic–what happens to the human body after it dies?–and at once educates and entertains. From the ancient Egyptians, to medical research, to cosmetic surgery to crash tests, she shows us all the ways we use corpses. Roach interviews and gets the facts and stories, but also inserts herself in the story and her thoughts, which are witty and hysterical. She is a gifted writer with tons of curiosity. The human corpse has contributed much to our understanding of the body and world, making our lives better and safer. Read this to learn, to grow in appreciation and for a good laugh! Four/five stars.
The beautiful speech given at NHF by chair Jorge de la Riva stressed caring, and the dangers of indifference. Jorge, the father of a teen with hemophilia, deftly drummed home by a quotation from Holocaust survivor Elie Weisel, whose book Night, I just reread a few weeks ago:
“The opposite of love is not hate, it’s indifference. The opposite of art is not ugliness, it’s indifference. The opposite of faith is not heresy, it’s indifference. And the opposite of life is not death, it’s indifference.”
How appropriate to use Weisel to remind our community that if we do not watchdog our own interest,s we may be hurt–again. And this is why the theme of this year’s meeting was “Nothing about us, without us.” More and more, NHF (and HFA and other groups) are steering the interests of the community, from research, to data collection, to blood supply safety, to genotyping. We’ve come a long way in 20 years, and paid a hard price.
Two more great guys! Derek Nelson and Chris Bombardier
Val Bias, CEO of NHF and person with hemophilia, gave a speech on the many and exemplary accomplishments of not only the NHF but of various groups and individuals in our community. During the videos shown, I thought instead of two people who have done extraordinary, history-making things in our community, just this year—Chris Bombardier, the first person with hemophilia in the world to conquer four of the seven summits. And Barry Haarde, who has now ridden his bike three times across America, to bring attention to the public of hemophilia and HIV. It’s nice that we showcased who we did, but Chris and Barry volunteered weeks of their lives to do something no one else has ever done, which are extraordinary feats even without hemophilia!
Martha Hopewell with volunteer Evan Poole
I’m happy to say we did acknowledge them, at the Save One Life Celebration on September 17 at the Intercontinental Hotel in Washington DC, just before NHF kicked off. It was a lovely event, with about 77 attendees, including donors and sponsors. We honored special people who have helped make Save One Life a success so far:
Over 1,300 people with hemophilia in 12 countries who live in poverty supported directly with financial aid
80 scholarships to foreign individuals since 2012
8 micro enterprise grants in 2014
Over $1.5 million in direct aid!
Laurie with friend and colleague Val Bias, CEO of NHF
All this goes to people who live on the fringe of life, the poor, the suffering, in places like India, Zimbabwe, Pakistan and Honduras. And we honored Chris and Barry who have raised so much money for us. And our Inspiration Award went to Mark Skinner, former NHF president, WFH president and current WFH USA president (and personal friend) who has inspried me for many years with his brilliant insights, his compassion for the poor and his endless volunteerism. Accepting the award for him was Mike Rosenthal, executive director of WFH USA. We were surprised and pleased to see Doug Loock in attendance, who, back when he worked for the American Red Cross in 2000, gave us our first grant, and was the first supporter to help us!
Doug Loock, in red tie, who gave Save One Life our first ever grant in 2000
Thanks to NHF for allowing us to hold the even at their event (thanks, Val!); and to ASD Healthcare (thank you, Neil Herson!) for being our major supporter of the event. Also thanks to Baxter, Novo Nordisk and CVS Health for supporting the event.
Best news of all? We picked up 30 more sponsored children as a result!
If you want to learn more or support a child, please visit http://www.saveonelife.net
Laurie with Neil Herson, president of ASD Healthcare, accepting award for Chris Bombardier
Martha with Jessica Swann, accepting award for Judi Faitek
Usha Parasarathy accepting award for Program Partner of Year
Mike Rosenthal accepting award for Mark Skinner
Eric Hill, president of BioRx and Board Member
Arwind Manohar of Baxter accepting award for Barry Haarde
Great Book I Just Read Blood Meridian [Kindle] Cormac McCarthy
The author of No Country for Old Men does it again. This is a masterpiece, an American classic, written with such skill and depth that you cannot skim, cannot rush; it has to be savored, thought about, explored. The main character, a young man only referred to as “the kid,” runs away from home in the south and heads west in the 1800s. He meets many groups and characters, but ultimately joins a scalping posse, intent on capturing as many Indian scalps to sell as possible. Like many of McCarthy’s stories, the theme is bleak, desperate, dusty and desolate, like the land the kid crosses. The main theme seems to be that evil lurks everywhere: there are no good guys or bad guys in the Wild West: just survival. And every single person, whether Indian, white, male or female, harbors evil deep within in the quest for survival. It’s a somber read, but the writing style alone is like a delicate fabric of words, woven so that you see no seams, only a beautiful, dark, and captivating cloth; worth reading if you want to read something by a master. Five our of five stars.
I’m attending the World Federation of Hemophilia Congress in Melbourne, Australia. I’ve been attending these since 1996, when it seemed I knew everyone, and now, with 4,000 attending from 128 countries, it’s at once hard to see familiar faces, and yet, that’s a positive side effect of the success of the WFH’s outreach to so many patients, physicians and partner organizations globally.
Aung from Myanmar: The face of hemophilia in the Third World
The opening plenary yesterday, led by WFH president Alain Weill, welcomed everyone, and provided some surprises.
My concern is always access to product for those in developing countries. Indeed, in the opening ceremony Sunday night, Weill announced something to the effect that this was a great time in hemophilia, a great era. Treatment for all! That’s the slogan. Well, yes and no. Not if you’re a child in the heart of Africa.
But there was great news at the plenary Monday morning. Weill said that since 1996 WFH has distributed 248 million IUs of product in 86 countries, helping about 90,000 people with bleeding disorders. (I’m proud to note that Project SHARE, a program run by two people, me and Zoraida, has distributed since 2002 about 60 million IU to about 55 countries) Weill announced some amazing product donation pledges: Biogen Idec and Sobi have agreed to donate 500 million IUs of factor over the next five years to WFH’s Humanitarian Aid Program. Grifols committed to 60 million IUs over a three-year period. And the Italian Centro Nazionale Sangue (CNS) announced donations of up to 30 million IUs of factor VIII per year over a five-year period.
Alain Weill and Dr. Gabriele from CNS Italy
As the Soci CEO said, we want to stop thinking of donating product at the end of the day, and make it the first thing we think about in the morning. In other words, this will allow WFH to plan strategically how to use product donations to improve care, rather than leaving it to act in crisis mode (which is often how Project SHARE operates, and it’s difficult to operate like that). So the donations will be charity used with a strategic purpose to enhance development. Awesome.
I attended an interesting meeting called the Management of Hemophilia with No or Limited CFCs, withCarlos Gaitan Fitch of Mexico as facilitator. Four speakers presented how they manage hemophilia with little or no factor.
Ricarte Felipe, new president of HAPLOS of the Philippines, age 50, reviewed his life growing up without factor. He spoke from a wheelchair that day, and from which he was confined for 3-7 years of his young life. He was diagnosed at age 8 with hemophilia A. At age 12 lost his left eyesight in an accident. Yet he managed to get a college diploma despite the challenges. Only in 1986 was he started to be infused with plasma and cryo. In 1988 he received his first infusion of factor due to a tooth extraction. What a survivor!
He shared that factor in the Philippines is $100 for a 300 IU vial. And while in 2010-2013, he was treated mostly with CFC (clotting factor concentrate), factor is not available much in the Philippines. The government does not buy it. And it is so expensive, most families cannot afford it.
So how do Filipinos manage? Support from HAPLOS consists of psychosocial workshops, camps, workshops, and “Mass healing,” where attendees at church pray for the patients.
Zoraida Rosado and Agnes Nalubiri of Uganda
What was sadly missing from this touching account was this: what is HAPLOS doing to secure factor, to change the destiny of the children being born right now with hemophilia in the Philippines? It’s difficult to listen to the suffering, especially from a leader, and not hear about what is that organization going to do to change this.
Dr. Gilian Wharfe, University of West Indies, Jamaica, also presented. I’ve known Dr. Wharfe for many years and have visited Jamaica twice to meet with her and the patients. She clearly laid out the issues facing Jamaica: high unemployment, stagnant economy, inflation, and factor costing $ .50 per unit, beyond what parents can pay (we know; they contact us regularly), makes it impossible for the government to consider putting factor in the federal budget. The only access to factor is from donations.
Laurie Kelley with long time friends Massod Fareed Malik and Deon York, each presidents of their country’s hemophilia organizaiton (Pakistan, New Zealand)
With approximately 200 patients, and only one HTC at UHWI (which is not a public hospital; the patients must pay), one national blood transfusion center and several collection centers, Jamaica struggles to provide care to hemophilia patients. The stopgap measures for care include: prevention of bleeds, early treatment of bleeds (How can you do that with limited access to factor, distances to travel, long waits for cryo or FFP to be thawed, etc?) and educating patients about how to avoid bleeds and recognize bleeds early.
It was a rather bleak assessment, and a classic example of life in the developing world with hemophilia. You have to admire the physicians like Dr. Wharfe who must practice under these conditions.
Dr. Daniel Hart,hematologist at Barts and The London School of Medicine, spoke about his experiences twinning with Bangladesh and The Royal London Hospital Haemophilia Centre. It was an excellent summary about how twinning can help slowly transform a country. Twinning means the medical center in a developed country pairs with one in a developing to share best practices and hopefully, to help resource the less developed center.
Aussies Steve Russell and Fred Wensing help Aung of Myanmar to attend the Congress and buy a wheelchair to take home
Dr. Hart described how Bangladesh uses “.001 IU per capita,” compared to 5.8 IU per capita in Australia. Numbers like these give hard, cold facts to global factor disparity. He covered a lot of ground in his talk, but what stuck out were two things:
1. Diagnostic accuracy is fundamental, as well as access to expertise, advocacy (really important—hitting up the government, emergency centers, pushing the national hemophilia standards everywhere), and patient and physician education.
2. Perspective: Hart showed an old trailer in an old photo, and said this was how the treatment center in London, now a world class center, started. In just an old trailer. His photos progressed to a high-end sports car!
So conditions now do not have to persist over time. Treatment can improve. But… and the Philippines should heed this… you cannot get anywhere if you don’t fix up the trailer. Advocacy is a must—pushing the national agenda, having a strategy, and first knowing what you want.
And everyone wants factor. Trust me.
Laurie Kelley with friends Richard and Lynley Scott of New Zealand