Go Away!

Spring is coming, and it feels like it, as more and more, the country is opening up. It’s wonderful to see that some of our community events are back in person! Read below to see which ones you might attend. Remember, we are not yet through the pandemic. Please be sure you are vaccinated, and be careful. I’m going to wait a bit more before attending, but remember, you can always attend virtually. Check it out!

Factor IX Families Welcome!

Register for the Coalition for Hemophilia B’s annual meeting in Orlando! May 19-22; travel grants available! Attend also virtually. Register here.

NHF’s 74th Annual Meeting

NHF is thrilled to announce that its 74th Annual Bleeding Disorders Conference (BDC) will take place from August 25 to 27, 2022, in Houston, Texas. After two years of uncertainty, NHF is excited to gather our community in person! You can also attend virtually. Read more here.

Saddle Up!

Texas is the place to be this year! HFA will hold its annual meeting in person in San Antonio, the first time since 2019. Register here!

NHF 61st Annual Meeting Wrap Up

Last week was the NHF 61st Annual Meeting, held at the San Francisco Marriott. Beautiful location, beautiful city and lovely weather all made this a very nice meeting for all. The fact that it coincided with Halloween in such a spirited city made it fun for many attendees. Of course there were meeting to attend, things to learn. No surprises (unlike last year’s meeting) and I was happy to see a big emphasis put on inhibitors this year. I attended the Grifols’ sponsored symposium on inhibitors, and was able to hear my friends Janet Brewer and son Stephen speak, as well as Kerry Fatula, mother of four boys (three of whom have inhibitors). If nothing else, the meeting was worth it to hear them speak. What powerful stories! They go through more medical interventions in one year than  I have been through in my child’s 22 years. This is a struggle faced by all families with inhibitors.

I was most happy to meet some folks from Medic Alert; our community uses their medical jewelery so often, it felt like meeting family!

I gave a presentation on Saturday at the Baxter symposium, with the theme “Your Tomorrow Starts Today.” It was fun to share the stage with John McNeil, a young man with hemophilia getting his medical degree, who also happened to be my child’s counselor back at hemophilia camp! Social worker Terry Hammink (University of Minn. Medical Center) did a great job moderating the morning. We were saddened only that Ellis Sulser, a top advocate in our community, could not join us as planned, due to his health.

See all the photos here!

I saw a lot of new families, and some long-time friends, some of whom I have not seen in 15 years! This is one of the great joys of our community, to know so many, to share so much with them, and to go through life together. No matter how many years have passed, a family with hemophilia is a family to us all forever. Congratulations to the NHF staff for once again pulling together a great meeting for our community.

After the meeting, I took a day off with Paul Clement and his family (Paul writes for us) to visit Alcatraz, the infamous island prison in SF bay. It was historical, educational, and chilling. I highly recommend it to all; you’ll not find many places like it.

Great Book I Just Read
A Long Way Gone: Memoirs of a Boy Soldier by Ishmael Beah
I finished this in two nights. It is a gripping and tender story of an innocent African boy in Sierre Leone, whose idyllic life is torn apart by civil war when his village is raided and he is forced to become a boy soldier at age 12. He loses everything, his entire family, his innocence and even his memories as he is forced to survive and eventually commit atrocities against civilians and rebels alike. Eventually he is rescued by UNICEF, and he shares his painful rehabilitation without asking for pity. It is a harrowing account, and breathtakingly honest; Beah is an exceptional writer. There is a happy ending, though nothing can ease his lost years and innocence. A must read. Four stars.

Mr. President, Meet Hemophilia

You know all the intense town meetings with President Obama that have focused on health care reform? One was held in Denver yesterday, and our own Nathan Wilkes introduced President Obama to the attendees and to hemophilia. The New York Times writes:

“At a town-hall-style meeting in a high school gymnasium here on Saturday, Mr. Obama was introduced by Nathan Wilkes, whose family nearly lost their health coverage after costs to care for his 6-year-old son, Thomas, who has severe hemophilia, approached the $1 million lifetime policy cap….In introducing the president, Mr. Wilkes fought back tears as he described the birth of his son in 2003, and the first question the doctor asked: “Do you have good insurance?” Mr. Wilkes told of how he ‘searched frantically’ for a new policy when his son neared the $1 million cap, and how a social worker suggested that he and his wife divorce, so their son might qualify for Medicaid. Eventually they found coverage, with a $6 million cap.”

Nathan and Sonji Wilkes are colleagues and friends: Sonji is a columnist for our newsletter PEN. They are both very active advocates for health insurance reform, and Nathan ran for a political office last year. Their son Thomas has an inhibitor, and Sonji is one of our peer reviewers for our new inhibitor book coming out last this year.

This was the town meeting in which Obama sited his grandmother’s death, and in which the university student Zach Lahn asked how private companies could possibly compete with the government on health care insurance. The NYT writes that Obama replied, “‘The notion that somehow just by having a public option you have the entire private marketplace destroyed, is just not borne out by the facts,’ Mr. Obama said, adding that ‘UPS and FedEx are doing a lot better than the Post Office.'”

Congratulations to Nathan for his select role in introducing the president, and thank you for representing the entire community at such a crucial time.

Great Book I Just Read: The Brief Wondrous Life of Oscar Wao by Junot Diaz
This New York Times best seller and Pulitzer Prize winner traces the story of Oscar, a fantasy, Dungeons and Dragons and sci-fi fan who wants to be a famous author. But we meet his entire Domincian family, three generations of the DeLeons–Oscar’s mother Beli, his sister Lola, his grandmother La Inca, and his friend Yunior– and in exploring their troubled, complex relationship, we also explore the culture and history of the Dominican Republic. Diaz writes explosively, with a hip edginess, directed right at the reader. He weaves into the story the violent history of the DR, its language, its beliefs, its people, its culture, the “Fukú” –the curse– and why Dominican men behave as they do toward their women. And Oscar is so un-Dominican: overweight, can’t dance, no social skills. He longs for a girlfriend, and comes squarely up against a culture of machoism. As someone who has been involved with the DR for 12 years now, I learned a lot more about the island and its people than I already thought I knew. It’s hard to characterize a culture but Diaz has adeptly done it in an entertainingly dark way. Four stars.

A Hot Time in Arizona

Laurie Kelley and Phil Hardt

Yesterday I attended and spoke at the Hemophilia Association’s annual meeting in Phoenix, Arizona, at the posh Arizona Grand Resort. My congratulations to executive director Alexis Christiansen and her team for a great meeting. At lunch we had fun and thought-provoking exercises that helped get our brains warmed up and fostered teamwork. It was amazing how intensely we all got into solving puzzles, when given a challenge, a deadline and a team. I gave a presentation last night on my work in developing countries, and was proud to mention Arizonian Phil Hardt, who has been helping those with hemophilia in Columbia for years.

The meeting was well attended, with about 200 in the audience. A special session was held for those who speak Spanish, and with a water park just next door, there was something for everyone.

I have loved visiting Arizona this past week. I toured the state this past week, and flew in a hot air balloon over Sedona, went horse back riding, hiked down and flown a helicopter over at the Grand Canyon, stood on the rim of the biggest meteor crater, hiked up Sunset Crater (a volcano), walked through Antelope Canyon and drifted through Glen Canyon while on a boat in Lake Powell. Despite the severe heat, and much mileage, I could never complained: it was one of the best road trips ever. Arizona is truly one of my favorite places!

Laurie Kelley and Alexis Christiansen

I finished off my week by a visit tonight with a special lady: Susan Phillips, mother of a son with hemophilia. Susan’s other son, Mark, raised about $3,000 for Save One Life last year with a luau dinner party, enough to sponsor five children for three years! It was an honor to meet her, and a great way to end a fantastic week.

Good Book I Just Read
The Life of Pi by Yann

I rarely read fiction, only because real life is already so interesting, but this book came highly recommended. It was a bit hard for me to get into, but eventually, I became intrigued and loved it. I love animals and survival stories, and this was a perfect blend of both. An Indian boy, Pi Patel, is raised in a zoo; his father is the zookeeper for the Pondicherry zoo in India. Pi explains in wonderful detail the lives of the animals, while he himself searches for meaning by exploring different religions. Eventually his father sells the zoo and relocates his family to Canada. But while en route, their steamship sinks, and Pi finds himself on a lifeboat with a zebra, hyena, orangutan and a 500 pound Bengal tiger, and so his real adventure begins. Well written with striking imagery and a gripping story. Three stars.

NHF’s New Direction, Movie

The NHF ushered in new leadership at the 60th Annual Meeting in Denver this past week, just as our country has voted in new leadership. With many parallels to be made, there is a feeling that our community is ready for change. Val D. Bias, person with hemophilia and already a prominent leader in our community, was hired as the new CEO of NHF. The community faces a multi-front challenge to its current status: increasing pressure from payers to lower reimbursement rates; payers forming specialty pharmacies to switch patients away from traditional home care companies and 340B programs; tightening of funds to donate; speaking with one voice and one message; forming coalitions with other rare disorder groups; rising obesity in the bleeding disorders community. Many of these challenges were addressed in depth in the various workshops

About 2,000 attendees were said to be present at this historic meeting. For most it was a great reunion of long time friends and colleagues, and for many it was a first glimpse of the community with all it has to offer.

I have been attending NHF meeting since 1992, and saw many long time friends. In speaking with representatives of industry: home care companies, HTCs, pharmaceutical companies and the NHF chapters and hemophilia nonprofits, the most frequently mentioned word could easily have been “change.” Things are changing in our community, and without vigilance, a voice, a strategy and action, we could stand to lose many of the gains we have fought so hard to win over the last decade in choice and access of services and products.

Opening Ceremony: Theatrics or Thunder?

Perhaps this is why the opening ceremony was so different than any other I have seen. The room was a Democratic or Republican National Convention theme. Vertical banners with state names were placed in sections; a large screen projected images from the podium; and red and blue balloons poised overhead in a net, waiting to be spilled. Different, definitely different, people murmured. There was a cordoned off area with red, white and blue streamers: only certain people were to sit there, apparently.

Then the lights went out and the somber and foreboding 12-minute trailer of “Bad Blood” was shown. When it was finished, lights went out again, then a spotlight shown on Val, alone on the podium, seated on a chair. Val spoke for most of an hour, sharing his vision of where NHF should lead the community. No doubt aware of the audiences’ curiosity about the trailer, he stressed, “Let’s put our past in a place of honor, where it belongs, and move forward.” With that he introduced the Campaign for Our Future, which was already introduced to chapter leaders in June.

The slogan is: Access to Care Today, Achieving a Cure Tomorrow. Val stressed four areas of focus:

Government awareness and support
Education for all life stages
Access to care at HTCs
Research and training

A check for $2 million was presented from Novo Nordisk to support the campaign. Most if not all the manufacturers have also contributed to the campaign, which hopes to raise $10 million to implement the campaign. Then the balloons overhead were released and everyone cheered and applauded. It seemed to be a new start for the NHF, and most people left feeling upbeat.

Later on, as people filtered out of the conference hall, there seemed to be second thoughts and questions by people. Many asked each other, “What did you think?” The trailer for “Bad Blood” was grim, dark, and pointed fingers some said. What was the point of the film? Have we not had 23 years of success, with no documented viral transmission? “What does the movie have to do with the new campaign?” one attendee asked. “If it’s for the future, why are we bringing up this past again?” Some people said they cried just watching the trailer as it evoked strong emotions of children contracting AIDS in the 70s. Some had nodded their heads approvingly as the film was being shown. Others feared the film was too strong, too biased, that it set the wrong tone for the NHF meeting: the movie would stir up negative feelings and fear in the absence of adequate general information about blood safety to new parents at a time when plasma products are just making a comeback. Everyone suddenly seemed to have a strong opinion. It was indeed a different kind of NHF opening: thunderous to make people take action, or theatrical to gain attention?

There was a lot to think about, and a lot to do. I was privileged to attend the Medical and Scientific Affairs Council (MASAC) to present my factor donation program, Project SHARE. As we donate millions of units of factor each year, we thought it a good idea to let MASAC know how we operate and answer any questions they might have.

The two and a half days NHF conference were filled with workshops, lectures, and symposia on all types of subjects related to hemophilia and von Willebrand Disease. Social events included lunches, raffles, and the final event, sponsored by Baxter: a wonderful and lively band, dancers, plenty of food, picture taking and dancing. Everyone got in on the dancing, which went till 11 pm. NHF planners and staff are to be commended for their ability to accommodate so many people with so many needs in so many sessions so perfectly and graciously.

If you attended NHF’s Annual Meeting this past week, please feel free to leave a comment! I’ll write next week about some of the meetings I attended while at the meeting.

See all the photos here!

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