Leadership

A Transformational Leader Remembered

Dr. Tahir Shamsi of Pakistan

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?

Laurie and Tahir’s First Meeting – 1998

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.

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.

Tahir comforting a father

Remembering Renée

 
Laurie Kelley and Renée Paper, 2002

This past week I’ve been working diligently on updating my book, A Guide to Living with von Willebrand Disease. I feel guilty saying it’s my book—it was actually “our” book, my and Renée Paper’s. It’s been out of print a while, and we truly need this resource. While thinking of Renée as I edited it, I realized that tomorrow marks the 10th anniversary of her passing, and working on this book made me realize again what a valuable leader, friend and advocate she was.

She was only 49 when she died, after an eight-week hospital stay following a fall. She had dealt with multiple health challenges: von Willebrand disease, diabetes, hepatitis C. Compounding this was obesity. After she lost her sister Michelle, who suffered from similar health concerns, she decided to have gastric bypass surgery, in an attempt to improve her health. She lost a remarkable amount of weight, but the years of illness had taken their toll on her body. What’s truly amazing is that nothing, nothing, seemed to slow Renée down!

She traveled and lectured frequently. She was a powerhouse when lecturing. I saw her absolutely command a room full of nurses and doctors with her photographic memory, brilliant knowledge of VWD and her deep-seated passion. She spoke with authority, compassion and a call to arms, for everyone to find unidentified VWD patients, get them the treatment they deserve and need, to stop the silent suffering of women. She herself had had a hysterectomy in her early 20s, rendering her unable to have children, when doctors did not correctly diagnose her with VWD and sought to end her uncontrollable bleeding. I think in part her burning dedication and fiery style of lecturing was fueled by the embers of what was left of her ability to control her life, to have children. She didn’t want this to happen to any other woman.

Fiery style of lecturing? If you never heard a Renée Paper speech, you missed some great and shocking speeches. One of my favorite lines by her was when she blamed the medical community for misdiagnosing women who had VWD as being “hysterical,” or “imagining” their illnesses. “You know why this happens?” she would bark out. “Because men dominate the medical scene! And you know why they don’t take us seriously? Because men don’t have uteri!” Leave it to Renée to always use the correct Latin plural of uterus.

 Renée traveled with me to Puerto Rico and the Dominican Republic on business together, and she and I presented in places as close as Connecticut and far away as Australia. She was brilliant; she was fun-loving. She was could be irreverent yet compassionate. She loved animals, and one of her favorite gifts to her friends was to send a photo of herself each New Year’s with a different animal from different parts of the world: kissing a dolphin in the Caribbean; draping a boa constrictor around her neck in Mexico; nuzzling an alligator in New Orleans; atop a camel in the Canary Islands. Renée knew how to grab life by the horns and tame it, and she wanted others to do that, too, regardless if they had a disorder or disability.

 Renée walked the talk: her message was always to get educated about VWD. Don’t let it keep you from enjoying life. Play the hand you were dealt. (Yes, she was from the Las Vegas area!) Play it and win.
Renée was a visionary leader. As an emergency room nurse in Nevada, she saw the need for a patient-based hemophilia organization and an HTC. Nevada had neither when she first lived there. Typical of Renée, she saw the need and figured out how to meet it. She founded Nevada’s first patient organization and HTC, both of which continue to this day. In fact, November 1 is Renée Paper Day in Nevada! How many people can claim such an honor?

 So we remember an inspiring and action-oriented leader, who was warm and loving, and also at times, a pain! And she knew it, and didn’t care. She had places to go and things to do, and a higher calling. As if she knew the clock was ticking, she made incredible accomplishments that continue to benefit patients to this day—including the world’s first book on VWD, which will be re-released in 2018. A legacy like that is the mark of a true leader.

Barbados: Preparing Leaders for Change

Sofia Codrington

Last Sunday, I had a nice flight back from Union Island to Kingstown, St. Vincent, and Martin Jennett, the pilot, was so supportive of the work we do at Save One Life,  he gave me a huge discount on the charter flight price, only $100 (compared to $160 going over). We said our good-byes, and then I waited to board my flight to Bridgetown, Barbados. I sat in the little airport café, sweating in the humid air, answering email and reading.  It was a quick flight to Barbados.

I settled in at a pizza place (Chefette) at the airport to wait for and in a little while, a lady and son came up to me—Sofia! And her four-year-old Aaron, who has hemophilia. We embraced and as always, when you meet another mom (or dad) of a child with hemophilia, it really doesn’t matter your nationality, race, religion. We are all family.

Sofia had asked me to come and visit, as no one from the hemophilia community has been here before (that I know of). She is interested in starting a hemophilia society. We hold Aaron’s hand– he is a live wire–and go to the parking lot, stuff the suitcases in and drive to the Marriott, not too far away. I am nursing a very sore throat. Sofia drove me to the Marriott, and we said our goodbyes.
Monday February 10, 2014
II had a leisurely morning, breakfast downstairs and then waiting for Sofia. And waited. Island culture—island time. Things will happen when they happen!
When she arrived, we had a chat. She explained about how she learned Aaron had hemophilia: He was 9.8 lbs at birth, seemingly normal. At 9 months he began crying all the time, and his knee was swollen. She took him to Dr. Inniss, her pediatrician, who sent her to the Queen Elizabeth Hospital (QEH), the only public hospital on the island. The doctors didn’t know what was wrong. They admitted him and did a biopsy on the knee! And they did an x-ray but never saw a bleed. The knee was traumatized but eventually the bleeding stopped and went down by itself.
In 2009 Sofia went to New York for a vacation, as a relative is there. Aaron had had a
fever. As the plane was landing Aaron cried and cried, inconsolable. No one knew but he was having a spontaneous head bleed. They took Aaron to Long Island
Jewish Hospital, a good HTC, and Dr. Richard Lipton helped determine this was a
cranial bleed. They ordered a CT scan. She said they told her, another 15
minutes and the damage might have been irreparable. Now they realized he had
hemophilia. Her cousin finally told her that her dad and both uncles had it! Aaron
stayed at LIJH for 6 months, and received factor. And there seems to be no permanent damage, thankfully.
Sofia explained how hemophilia is treated. Here in Barbados, everyone gets free factor. But I questioned what exactly does that mean? An unlimited supply? No. It means that the government buys a certain amount for the year, and whatever is there, you can use and don’t get
charged for. But inevitably it’s not enough and gets used quickly. This is why a few patients had recently contacted us for a donation.
Sofia also mentioned Aaron’s dosage, 1700 IU for a 4 year old, three times a week. This dosage seemed excessive.
We then drove to meet with Dr. Patricia Inniss, Aaron’s pediatrician. We waited about an hour and a half in her waiting room. It seems our day is
filled with waiting, waiting. No lunch. My throat got worse as the day went on. It was hard to maintain a conversation as I could hardly speak.
Finally we were let in. Dr. Innis is a lovely woman, graceful and civil. I gave her our toddler books about hemophilia, and asked her about Aaron, and the state of hemophilia on the island. I asked Dr. Inniss about Aaron’s prescription; why a 4 year old is be given 1700 IU, enough for a teenager. She wasn’t sure.  So we talked about lowering his dose.
After that we drove to meet with Ms. Maryam Hinds, director of Drug Services of Barbados. Gentle, articulate, devoted. We had a nice
chat. She showed me the drug formularies, the tender and explained how factor was procured.  According to her, they spend only enough money for 75,000 IU of factor VIII, much less than what one American child uses in one year! But at least Barbados is buying some. Many countries that have much more money than Barbados don’t even buy factor.
Queen Elizabeth Hospital

No one seems to know how many patients are on the island. I calculated 20? But one doctor later estimated 50. This, I told Sofia, is where a patient organization can really help out, by reaching out to patients in all the “parishes,” as they call them—St. John’s, St. Andrew’s, etc.

Tuesday February 11. My voice is gone and I can only whisper now, which is unfortunate as we meet with hospital doctors today.  Today’s meetings warrant a dress, and Sofia drives us to meet the hematology staff at the Queen Elizabeth Hospital (QEH). The hospital is your basic, underfunded public hospital in a developing country, yet it buys factor, which is astounding. We go to hematology and meet with Dr. Laurent, Dr. Hawkins (originally from England) and a student. Laurent accepted our donation of factor, looked into the bag,  passed over any thank you to sadly ask, “No
NovoSeven?” Which I guess shows the state of desperation here.

Hematology Ward

She painted a picture of hemophilia on the island. One patient is a fisherman, and he was forever getting cut with hooks, cleaning knives, etc. They asked him to think about getting another job perhaps? They
also mention the “poor whites,” on the other side of the island. This raised our eyebrows as being a politically incorrect thing to say, but yes, this is a real term used here.
The “poor whites” are  descendants of an estimated 50,000 white slaves  transported from Ireland to Barbados between 1652 and 1657. I read on line “Having succeeded in recruiting Irish men to die in the services of France, Spain, Poland and Italy, Cromwell turned his attention to others – men and
women press-ganged by soldiers, taken to Cork and shipped to Bristol where they
were sold as slaves and transported to Barbados.” They are now called “poor
whites,” or Red Legs or Red Shanks. They live in St. John parish and no one
knows much about them except they have hemophilia among them; they tend to intermarry and not mingle with the blacks. I thought that would make for a very interesting visit my next time around.
After our meeting,  we went with Sofia to the pharmacy and waited till her number was called. She received quite a few boxes of FVIII. More concerning was that Aaron gets an allergic reaction to each infusion of these. I told her that her hematologist needs to let the manufacturer know.
We then drove a long way round the island to visit Dr. Chris Nicholls, her hematologist. He’s a nice guy. Young, responsive, communicative, smiling. When I carefully broached the subject of Aaron’s dosage, he agreed that we needed to look into this. When I carefully broached the subject
of Aaron’s allergic reaction, he was also in agreement that the manufacturer needed to be contacted. It’s great to find a doctor so agreeable and open-minded. He lamented that no medical records here are kept digitally; all records are kept on paper! He studied in the UK and just returned not even four years ago here. He works in the QEH but also has his own practice. We asked if he might be interested in forming a nonprofit with Sofia,
and he agreed.

Mel with Sofia: Outreach to other families

Last, we drove some more to visit a mother—Melanie. Sofia told us she runs a “shop,” and I pictured a little boutique. Not even close; it was a roadside stand, the kind covered with tarp that sells chips and drinks. Mel’s little son Remel fought desperately to hide from me though it was more like a game. Nothing we did could entice him to stay still for a picture. This led to an instant bonding which was good. We all laughed
at ourselves trying to get Remel to be still. Finally I tricked him and as he turned the corner, caught him in a great shot. I jumped in the air and pumped my fist, and the mom, and the neighbors sitting and watching all applauded! It was great.
 
Melanie told us that she has nephews with hemophilia in Guyana. I said we knew two brothers, Laurence and Lloyd… and she said that is them! What a small world! We’ve been helping her nephews for a long time.  Another bonding moment.

Laurie with Aaron

Remel has factor VIII deficiency

February 12, Wednesday evening. Sofia invited local families with hemophilia to meet us at our hotel for dinner. We were surprised at how many came, including two in wheelchairs—Jeffrey and Leemar, who we both sent factor to recently.
Dinner with Barbadian families

There was Kole and Kim, whose son Konnor has FIX—a handsome couple. Jeffrey, age 61, a real
hoot… great outlook and sense of humor. Ansley Marshall, with son Caiel. And Leemar, age 26, FIX with an inhibitor, so sweet, gentle and funny! Born only a month before my son, but
a world away. He has suffered horrifically. Jeffrey is his uncle. They both
spoke about what the pain was like: four nights, no sleep. You don’t want anyone
near you. No one can do anything for you to alleviate the pain. Jeffrey said,
“And you just pray for a few seconds, just a few seconds, of no pain so you can
have some relief.” The pain comes in waves, like the ocean that pummels the beaches
on this beautiful island. Leemar’s friend who brought him was interested and
asked questions. Such bright young men.

Dinner with Barbadian families

We took a photo, I paid the check for the dinner and drinks we bought for everyone, and promised to follow up with books and materials. I gave a pep talk about change and what they can do as patients and leaders to improve medical care and access to factor. But it wasn’t my best as my poor voice was at an end. But it was a great way to end a great trip.


The origin of the name Barbados?The name is Portuguese. The reference of the Portuguese to the island as Los Barbados (the bearded ones) is believed to describe the bearded fig trees on the island.

 
 

Become a Leader! (Fast!)

We have a lot of programs in the hemophilia community, but this is one of the best. You may need a lot more than just a diploma to secure a great job; you’re competing with talented and smart people. One thing that all prospective employers look for (me included) is leadership: that esoteric quality about someone that sets them apart from the pack. You don’t always learn it in school, but you can learn it here.
I was present in 2006 when a group of great people from our community came up with this idea and presented for funding. The Bayer
Hemophilia Leadership Development Program
(BHLDP) provides college students from the hemophilia community a unique internship opportunity to build foundational leadership skills while also deepening their connection to the hemophilia community. BHLDP, now in its eighth year, gives selected interns an opportunity to work directly with the Bayer marketing team in Whippany, New Jersey. Interns also get to experience rotations which include a public policy awareness session in Washington D.C., a community advocacy-focused visit to National Hemophilia Foundation in New York, and activities with Bayer’s partners.
When discussing their favorite aspects of the internship process, the former interns commented that they were surprised—and thrilled—by the amount of real work they were able to do during their time with Bayer. “We were exposed to real meetings and real experiences,” said Lewis Chesebrough, a 2012 BHLDP intern. “We participated in a real professional environment with people who were supportive and kind to us.”

In addition to getting to do real, meaningful work, the program also helped interns chart a course for their future. Christian Mund, a member of the 2013 internship class and a junior at Syracuse University, said that his Bayer internship helped him realize marketing was the path he wanted to pursue following graduation. “Before the internship, my local sales representative asked what I wanted to do after college; I had no idea. After I finished the BHLDP internship program, I knew marketing was what I wanted to do because the internship really opened my eyes to what I could do after graduation and now I am looking for other internships in marketing.”

Following a BHLDP internship, many former interns have stayed involved in the hemophilia community. Rich Pezzillo, a member of the 2007 internship program, is now the Communications Director at the Hemophilia Federation of America (HFA). “The BHLDP internship helped give me direction on what I was most passionate about and how I felt most fulfilled,” said Pezzillo. “I now have opportunities to help other young adults that may not have the proper resources or the family to talk to about what it is like to have a bleeding disorder.” And Aaron Craig, a member of the 2010 internship class, started a company called Microhealth that developed an app for the hemophilia community that he says is like
“Facebook for the health care system of hemophilia.”

Bayer is currently accepting applications for the 2014 Bayer Hemophilia Leadership Development Program. Applications for the six-week, paid internship are due by Friday, February 28, 2014. (Yeah, I put that in red, so move on it!) For more information and to apply visit https://www.livingbeyondhemophilia.com/webapp/index.jsp

For US patients only.
(Truth in advertising: The above is an unpaid announcement for the common good)
Great Book I Read
Act Like a Lady, Think Like a Man: What Men Really Think About Love, Relationships, Intimacy, and Commitment   by Steve Harvey
This was a gift from a co-worker who obviously thinks I need help in the dating department. She might be right, after reading this hysterical and no-nonsense view of how women should date from a man’s point of view. Blunt and taking a somewhat dismal view of men in general (think “dog training”), there are still some nuggets of truth here and it’s a whole lot of fun to read anyway! Men are not just from Mars, they are an entirely different species altogether and in severe need of BF Skinner’s behavioral training. I read it in one night and laughed a lot. And learned a few things. Three/five stars

Who are the Future Hemophilia Leaders?

mentor (n.) Look up mentor at Dictionary.com

We often hear the word mentor, but what does it mean? Mentor hails from Greek writing. Mentor was a friend of Odysseus and adviser of Telemachus (son of Odysseus and Penelope) in Homer’s Odyssey. It may also derive from the Greek word  mentos (intent, purpose, spirit, passion) or from the Latin  monitor (one who admonishes), or from the root men (to think).

One of the prime responsibilities of any leader is to mentor and raise up other leaders. It does no good to create an institution, organization, or program and not share the leadership knowledge and managerial information required to run it and carry forward the vision. Leadership is an art, and young people can learn from the current masters how to use the tools and right perspective to create their own masterpieces. Never is this needed more in hemophilia. Our current leaders at NHF are working actively to recruit and teach up and coming leaders.

And industry is too! Here is a unique and brilliant opportunity to particiapte in leadership training. Check it out and apply today! Become a leader, with an aim to helping the future hemophilia community, here in the US and globally!




Program: Bayer Hemophilia Leadership Development Program (BHLDP) Internship


Requirements to Apply: Students enrolled full-time in college who are touched by hemophilia and have a strong interest in and commitment to becoming a future leader in the hemophilia community.


Program Details: Interns will travel to Bayer’s U.S. Headquarters where they will participate in activities that aim to help them grow personally and professionally. Selected interns will:

·       work directly with leaders at Bayer as they participate in formal training on communication skills, effective problem solving, leadership and compliance

·       work with hemophilia organizations in the area to learn about the work done to support the hemophilia community and how business professionals can support these efforts

·       meet with healthcare public policy professionals in Washington D.C. where interns will see first-hand how effective advocacy relations impacts legislative decisions.

This is an this eight-week, paid internship (June – August 2013). For more information and to download an application, visit www.livingbeyondhemophilia.com/intern.

Applications are accepted till February 8, 2013. I’ve known quite a few people who have finished this exceptional training and loved it! It’s helped them get jobs and open many new doors.

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