Laurie Kelley

A Transformational Leader Remembered

Laurie Kelley January 9, 2022

We lost a few of people in our bleeding disorder community over the holidays, including young people with hemophilia. But in two weeks we lost two outstanding leaders in their fields. One was Val D. Bias, who I wrote about last week. The other was Dr. Tahir Shamsi of Pakistan. Both were my friends.

Tahir was a special sort of friend to me. We inhabited very different worlds: I am a woman, Christian, nonmedical, American. He is a man, Muslim, nationally-recognized physician and researcher, Pakistani. We were united not only by hemophilia, but by our burning desire to alleviate suffering.

We met on a boat in Rotterdam, in 1998. I was just beginning my work overseas, funded at that time by Bayer Corporation. Bayer had sponsored this cruise around the harbor, on a Tuesday evening during the World Federation Congress. As I walked about the ship, I saw him and he saw me. He is friendly, but intense. Efficient, wastes no time. Who was I and what was I doing there?

I explained about my program to identify patient leaders in developing countries, and teach them about leadership, not just management; about advocacy, not just meetings. About vision, mission, goal setting.

He invited me on the spot to come to Pakistan.

That startled me. Me? Mother of three young children, in Pakistan? Pakistan at the time was pretty isolated from the world. Almost no one went there unless they were diplomats. It seemed so… so foreign. And yet I was intrigued. I love challenges and love risks. How would the Pakistanis accept me? What could I possible do for them?

He assured me all would be well. I could stay with him and his wife, and family. He would arrange my visits while there.

A year later, I went. It’s a story for another time (maybe another book) but I fell in love with Pakistan. Never have I been so welcome in a country and made to feel at home. And that seems odd, given our “differences.” I learned the differences are mostly superficial. We have so much more in common than different. I returned three more times and would have gone in this past year, were it not for Covid.

Tahir and I maintained contact throughout the years; I watched his family grow from two young children to five. I played with his children at their house, rode camels and ponies on the Arabian sea with them, took selfies, went to the mall, and had a ball. And Tahir and I met patients throughout Pakistan, worked with the new hemophilia society to help it grow, and we supported his surgeries with donated factor. We traveled to Nepal together, met up in Paris at a conference, and always had ideas brewing.

In fact, it was in Nepal, after our huge conference we gave for medical personnel, that Tahir shared his vision for a new institute in Pakistan. Somehow, we ended up sitting on the floor of a coffee shop, with him sketching out (on a napkin!) an idea for a new blood institute that would handle all sorts of cases, disorders, diseases of the blood, and be a research and training facility.

1999 Laurie and Tahir on Arabian Sea
First Visit to Pakistan

It all came to pass. The National Institute for Blood Diseases was created and Tahir founded Pakistan’s first bone marrow transplant program. The president of Pakistan recognized him for his incredible achievements. And the president offered his condolences in a tweet shortly after Tahir’s passing.

He got up to go to work in December, as usual. We had just messaged one another about how I would come over as soon as it was safe to travel, and stay at his new home, which accommodated all his growing family. He messaged, “You are always welcome.” Combination work and social visit. The kids are mostly grown, though the youngest is still just 15. I imagine he kissed them good-bye, as he adored his family, and had his driver take him to the office. We would have had interns to meet with, surgeries and patient visits planned. I do know he felt ill suddenly, and asked to be driven to the hospital. He suffered a massive brain hemorrhage, of all things. He never recovered and died, age 60, with so many depending on him, with so many achievements, but I know with so many more things he wanted to accomplish.

I don’t ever recall him saying he had a vacation in the 23 years that I knew him.

His death shocked me. You can never believe so wonderful a healer could be so ill. I could and would just pick up my phone whenever, and could message this famous and highly regarded physician, and chat with him like you would a regular person and friend.

But no more. Never again. He was gone, in a flash, a heartbeat, as if he sped away to attend to a medical emergency and never returned. He was always helping others.

The grief over his passing was palpable and deep. The NIBD team wrote on Facebook: “He was a national asset, a mentor to the juniors, a patron for many noble causes and a fatherly figure to all. Our loss cannot be described in words as the void he leaves behind is unfillable. He was director of the stem cell program, paragon of health research, an outstanding individual with excellent mentorship abilities, and an incredible human being. May Allah grant him the highest place in Jannah. Ameen.”

I will return to Pakistan, but it will never be the same without my friend, this incredible pioneer of medicine. He was a transformational leader, of the rarest type.

Remembering Legendary Leaders

Laurie Kelley January 2, 2022

It’s been a sad couple of years, made sadder today by blogging at the first of the new year about the loss of two incredible leaders in our global hemophilia community, one in the US and one in Pakistan, gone in as many weeks. I’ll write tonight about the loss of Val Bias, the first leader in the hemophilia community I ever met, who made a lasting impression on me.

Val Bias and Laurie Kelley at an NHF Annual Meeting

Val Bias was an icon in the US hemophilia community, an unmistakable presence with his dazzling smile and hearty laugh, who possessed charm but purpose, intelligence but an everyman, relaxed posture, a polished speaker who could also sit back and listen deeply. His goal was ultimately to channel his own pain and suffering, of which there was much, into something for the greater good. He was relentless, and successful, in that goal.

I first met Val during my first National Hemophilia Meeting in 1992. I was the mother of a 5-year-old with hemophilia who had just written my first book, Raising a Child with Hemophilia. I knew about HIV and vaguely what was happening to our community, but … not really. Wrapped up in my own non-HIV world, trying to figure out my place in the community, I watched with horror as a room full of patients, parents and advocates began to rip one another apart over what was happening in the community. People were furious at NHF for their lack of leadership, for advising patients to keep taking their medicine. A patient-led group had formed and stood up, shouting and threatening. Suddenly, one clear, commanding voice boomed: “Everyone, sit down and calm down.” I looked around to see who had this voice, this presence, this leadership. It was a handsome man on the podium, who seemed to be the only one with a rational expression and the only one not afraid. Val Bias.

He was famous already in the community for being executive director of the Hemophilia Council of California, a lobbyist for NHF in Washington DC, and president of the board of the Hemophilia Foundation of Northern California. He was an active camp counselor, mentoring the boys with hemophilia. What amazed me most about him was his role in helping get the Ricky Ray Hemophilia Relief Fund Act of 1998 passed. This act allowed monetary compensation for those infected with HIV who have hemophilia.

Later, Val became the first African-American leader of NHF and one of the first patients to become a leader in NHF. His presence was galvanizing and he made impactful structural changes, which required great risks.

The tributes and condolences are pouring in on Facebook but this one, from our mutual friend and colleague, Dana Kuhn, a particularly close friend of Val’s, hit me the most:

“The pandemic of HIV called for a change in narrative of the national organization [NHF]. [A] group of 5 men realized it was their responsibility to teach men with HIV how to protect women from HIV infection and empower men to educate others to become leaders in their communities. These 5 men convinced NHF to create the Men’s Advocacy Network of the NHF (MANN) which brought altering changes to NHF. The change was strategically training and placing men with hemophilia in places of leadership. As a result, Val became chairman of the Board of Directors of the NHF, and Glenn Pierce became president of NHF. Many of us became directors on the NHF Board. Under new leadership the organization began to work through the decisions and responsibilities of the HIV pandemic in the hemophilia community. With the leadership of Val Bias, positive change was made. The community was unified to work on the Ricky Ray Hemophilia Relief Fund Act of 1995. New, improved and safer hemophilia products were coaxed into coming to market. The safety of the Nation’s blood supply became a priority especially through blood/plasma collection processes. Government agencies and Cabinet level committees accepted hemophilia consumer members to these positions turning a listening ear to their concerns and perspectives. NHF created initiatives under Val Bias and Donald Colburn challenging the raising of funds for research in gene therapy for a CURE. Under Val’s leadership ‘Chapter Development’ was made a priority and programs were implemented. Chapters became stronger and more universally developed. I could go on with much more.

Val with Chris and Jess Bombardier, and Laurie Kelley, in 2019, recognizing Save One Life; the last time they would see Val.

“However, how can I impress upon the bleeding disorders community the passion and compassion this leader had for his community and the awesome change he facilitated coming out of NHF’s challenges with the HIV pandemic. We need to honor this leader and the work he accomplished to help make this community better. The NHF Board and leadership, the Chapters, Youth Leadership Programs, Cure for the Disease programs, educational programs, relationships with donors would not be where they are today without his leadership.”

One of the hallmarks of a true leader is not what position they held, or how many accolades they receive, but what legacy they leave behind. Val was a transformational leader who changed our world, for the better. RIP Val; your work is done. Let those you mentored carry it forward.

Learn more about Val Bias in the movie “Bad Blood,” available on most streaming platforms.

Learn more about Val’s contributions in this article in HemAware.

Merry Christmas!

Laurie Kelley December 26, 2021

Merry Christmas and happy and safe holidays! See you in the new year!

God Bless Us Everyone… with Hemophilia

Laurie Kelley December 12, 2021

Doug and I saw a local live performance Friday night of Charles Dickens’ “A Christmas Carol.” It was wonderful! A classic story about a greedy old man who spends his whole life counting his money, living frugally and sharing his wealth with no one. The story is about his visit Christmas Eve by three ghosts: The Ghost of Christmas Past, Christmas Present and Christmas Future. Really four, if you include the ghost of Jacob Marley, his business partner in life, who first comes to warn him of the coming apparitions.

It’s a brillant story, and a metaphor for life. What is most important? Who do we most care about, and why? What will be our legacy when we die?

In the story, the Ghost of Christmas Present takes Scrooge to the house of his employee, the long-suffering Bob Cratchit, who has a son with a mysterious illness. The illness is never disclosed, but we see its symptoms: a crutch, crippling, limping, pain. And when shown the future, little “Tiny Tim” does not survive.

Every time I watch this now, I wonder: could Tiny Tim have had hemophilia?

It’s not far-fetched. In 1859, Tiny Tim inhabited London when Queen Victoria’s son Leopold did (born in 1853), and he had hemophilia. But Tim’s condition was never disclosed. He didn’t have a cough (denoting tuberculosis, common at the time), or any other pain.

I’m going to imagine he did have it; and thanks to Scrooge’s transformation to a benefactor, Tim got medical care, nutrition, support and grew up. Of course, they did not have commercial factor. But even Leopold lived to his early 30s without it.

*Tiny Tim narrates the story of A Christmas Carol at the North Shore Music Theater in Beverly, Massachusetts*

To those with hemophilia then and now, in the words of Tiny Tim, “God bless us, every one!” And happy holidays!

A Christmas Carol has never been out of print, and is one of the most enduring, powerful stories in English literature.

Texts That Protect

Laurie Kelley December 5, 2021

If something big were happening, you’d want to know about it right away, especially if it concerned the factor you or your loved one uses. The Patient Notification System (PNS) is a free service that will notify you about any withdrawals, recalls or warnings concerning your specific product, and even ancillaries. Are you signed up with it?

Launched in 1998 by the Plasma Protein Therapeutics Association (PPTA), a group that is supported by manufacturers of plasma-based products and recombinant products, this system has diligently sent out hard copy, telephone and email notices of any changes in your prescription drugs.

There was a time in the early 2000s when these were frequent, as there were shortages, plant shut-downs, recalls, products taken off line, and more. You can imagine that the specter of the mass HIV infections in the blood supply in the 1980s led to this unique and vital service.

There’s good news now: stringent manufacturing practices, better donor screening and genetically-engineered products means that notices of safety concerns are almost a thing of the past.

Are you signed up? You should be. It’s free, confidential, and now fast! Just recently, the PNS added notifications by text, probably the fastest route these days. You will want to be up to date on any changes in the product you use.