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NHF’s 63rd Annual Meeting in Chicago!

Laurie Kelley November 14, 2011

The NHF 63rd Annual Meeting drew about 2,800 congregated from as far away as Guam and Israel to join Americans with hemophilia and the companies and medical staff who care for us. You can meet patients of all types, drug reps, homecare companies, and the nation’s top hematologists, nurses, social workers and other medical staff. You might even meet a celebrity ballplayer!

I’ve been attending since 1991, 20 years! It is pure joy to run into my friends and colleagues, see their children all grown up and healthy, and to meet new families. Often I am asked to give presentations, but this time, except for a Friday night presentation to a group of social workers and nurses, I was off the hook. There to network, socialize and learn.

For three days there are symposium and lectures, and plenty of opportunities to meet company reps to ask questions. CJ Wilson, former pitcher for the Texas Rangers, who was in the World Series, was on hand to meet children and sign baseballs. I was able to say hi to him, and he smiled when he remembered that I had put him in touch with the South African Hemophilia Foundation last year, when he asked to meet kids with hemophilia there while on vacation! You have to love a star athlete who does that.

I attended the Baxter Symposium Saturday morning, all about staying fit. Barry Haarde spoke about having hemophilia, HIV and Hep C, but being able to lead an active life. That’s an understatement: the man is fit as can be, lean and bikes hundreds of miles a week. He is a serious inspiration to me. Last week I read his Facebook note about how much he biked, and I literally got right on mine and cycled 18 miles. Also, Tres and Morgan Major spoke about raising three boys with hemophilia, and how they all stay fit by doing Tae Kwon Do and other activities. They are a family to admire: solid values, a plan, and togetherness expressed in physical activities and faith sharing.

One of the more interesting things I saw was “Cubixx,” a revolutionary way to record factor usage that may be offered next year–a dorm size refrigerator that requires you to log in bleed information before you can access your factor.

And one of the most beautiful things I saw at the event was the Remembrance Quilt, which was put in a quiet place, hung so you could almost be enveloped in its silence, sewn by all those who lost loved ones to AIDS.

The final night activity was hosted by Biogen Idec Hemophilia and featured “Blues Brothers” DJs, with plenty of food. I think hundreds showed for this great time.

Next year’s meeting is in Orlando, and I hope even more families can come for connection and learning. Thanks to NHF for another excellent event, for all their hard work, and thanks to all the companies that sponsored this amazing conference!

Off to NHF in Chicago

Laurie Kelley November 7, 2011

This week is National Hemophilia Foundation’s 63 Annual meeting, so I am off to Chicago Tuesday to meet with many old friends and colleagues. These include patients (some of whom I’ve known since infancy and who are now in college!), parents, home care reps, pharmaceutical reps, hemophilia organization leaders, and more. It’s always a great event!

NHF expects probably 2,000-3,000 people to attend.

I hope to post during the week about what we hear and see.

One thing on everyone’s mind is reimbursement. With the new Affordable Care Act, so much has changed and is changing. We need to learn all we can at meetings like this to prepare for unexpected costs, and changes in health care delivery. One thing is certain: the hemophilia industry as we know it is permanently changing. And change may come faster than we think.

To start learning about current changes in reimbursement, start reading!

A great place to start? CSL Behring’s latest Key Issues Dialogue focuses on diminished access to care for people with rare diseases via interviews with our nation’s top specialists and advocates for people with chronic disorders.

Book I Just Read
Managing the Nonprofit
Peter Drucker

Drucker is considered a business guru, though this book, published in 1990, is a bit outdated. It’s a quick read, and loaded with nutritious food for thought. Drucker defines how nonprofits are different than for-profits, and was one of the early oracles to say that nonprofits need to think and operate like businesses. And leadership is key! He gives great synopsis of what effective leadership is. One I love and still use: “The most important way to develop someone is to use them as teachers.” And I live by: “Don’t guess, go ask.” Too many business people fail when they assume. This book is short, can be read in one sitting, but gives you hours of materials to think on. Three stars.

Looking Into the Future in Chicago

Laurie Kelley October 30, 2011

While a winter storm gathered back on the east coast, I was in Chicago for a meeting with the Bayer Multidisciplinary Board Meeting. This is a group of thought leaders from the hemophilia community who meet once a year to discuss current trends in treatment, products and insurance, and predictions of what the community will look like and need in five to ten years.

I was unable to attend last year’s meeting at this time, so it was very nice to be back with the group, all of whom I knew. The team includes top hematologists, insurance experts, some adult patients, and homecare, distributor and nonprofit representatives. Of course, the hot topic is insurance! How are payers affecting the decisions being made now on treatment choices and product pipeline? For example, it’s already happening that payers are dictating brand choices in some places, said one participant. The impending merger of Express Scripts and Medco, two of the three largest PBMs, will radically upset the hemophilia apple cart and change the hemophilia landscape forever. Exactly how that will change was open to much speculation.

The most extreme prediction involved the fate of HTCs. One prediction is that in ten years there will only be half the current number of HTCs operating. There will be fewer hematologists. “We are victim of our own success,” expressed one doctor. Hemophilia has become so manageable that patients are less dependent on the HTCs. With cuts in federal funding, expect to see many close their doors forever. I saw this myself in New Mexico, where the HTC is struggling.

The bleak forecasts were accompanied by good news: treatments are better than ever, allowing a more normal life. Newer products, greater choice and who knows, maybe even cheaper products. Stay tuned–in 2012 I will provide a forecast by our community experts on what you can expect in the next ten years. It’s going to be a roller coaster ride, folks.

Interesting Book I Just Read
Sing You Home
Jodi Picoult

I normally don’t read fiction unless it’s a classic. This book was given to me as a gift. It tackles several hot buttons: gay rights, surrogate pregnancies, Christian fundamentalism. A music therapist—Zoe—finds herself childless at age 40, after a stillbirth. After her husband Max leaves her, Zoe eventually falls in love—with female counselor Vanessa. Eventually they wed in Massachusetts, my home state, and the first to make same-sex weddings legal.

Max, a recovering alcoholic, begins to attend a fundamentalist Christian church at the behest of his brother. The pastor is anti-gay. Max becomes a born again Christian.

The plot really thickens when Zoe asks Max to release one of their stored embryos to her so that Vanessa can carry their child, for the two women to raise; he counters by suing her for custody of them. So the book covers controversial issues as gay rights, evangelical Christians, in vitro fertilization, surrogate parenthood, and divorce. All this happens within six months! The story is from the points of view of three characters in alternating chapters. It’s a thought-provoking book on change, tolerance and what constitutes a family, when the biological parents have such different beliefs and life-styles.

Life is more complicated than presented here, however. Max became a born-again just in time as a set up to the ethical question of who should raise the kids. Christian fundamentalists seem very stereotyped. There are a lot of issues competing for the readers’ attention, and the ending is too neatly wrapped up, too quickly. But if you like to read, want a book to stimulate some thoughts about many current topics, this is one you can get through quickly. As an editor, I tend to be pretty harsh on how a book is written, but sometimes it’s nice just to read a different kind of book. Two stars.

Drought in New Mexico

Laurie Kelley October 24, 2011

I just returned tonight from a weekend visit to New Mexico, a state rich in history and desert beauty. I adore the Indian motifs everywhere and the startling bronze statue of an Indian warrior leaping out to greet visitors, an eagle soaring from off his hand. The tranquil beauty belies the trouble facing this western state.

I was invited to speak at the Annual meeting of Sangre de Oro (Gold Blood), the hemophilia foundation that serves New Mexicans with bleeding disorders. I was very honored to attend, and yet so saddened to hear of the struggles facing the members.

The Ted R. Montoya Hemophilia Program and Treatment center, established in 1980 by the New Mexico State legislature to identify and care for New Mexico residents with bleeding disorders, is facing severe budget cuts. Add to that a lack of staff as their long-time hematologist recently left. This is also a huge state, and many families live great distances. So the challenges they face are huge, particularly in this era of healthcare reform, in which we don’t know how this will all play out.

I must say the families who attended were delightful–especially the young boys who eagerly tried to answer my questions to the audience: How many people are there with hemophilia in the US? “1 million!” exclaimed one young teen. “100,000!” said another. (Correct answer: 17,000).

What impressed me most was the dedication of the staff, including executive director Loretta Cordova and president Johanna Chappelle (who I have known forever!). Great ladies, who with their team, are dedicated to advocacy to get funding and taking care of their members until things settle again. My deepest admiration to them all!

http://www.sangredeoro.org/

Good Book I Just Read
Doing Good Better: How to Be an Effective Board Member of a Nonprofit Organization
Edgar Stoesz and Chester Raber

This 1997 book has not lost any of its timely information on how to run a nonprofit effectively. It covers in a no-nonsense way how boards should form, act and what to expect as your nonprofit grows. The special emphasis on conflict resolution (conflict is good and necessary for growth) is excellent. There are also lots of templates for executive director/CEO performance reviews, and checklists for filing paperwork and board self-assessment. A quick read and very valuable! Three stars.

Recombinant VWD Product on the Horizon?

Laurie Kelley October 15, 2011

I just received word that Baxter has started Phase III of its recombinant VWD product. The investigational product is BAX 111, the first recombinant von Willebrand product in clinical development.

Currently, we have Humate-P (manufactured by CSL Behring) and wilate (manufactured by Octapharma), which are both plasma-derived. Wilate was the first product indicated for the treatment of bleeds in VWD patients. Humate-P has been the standard for years in the US. But don’t forget Alphanate (from Grifols), originally for treating hemophilia A bleeds, and now indicated for treatment of VWD patients (FDA-approved for surgical and/or invasive procedures in certain patients with VWD). Not FDA-indicated but sometimes effective is Koate-DVI (Grifols, distributed by Kedrion in US), because it has VWD in it, along with FVIII.

No one can say that America doesn’t have choice!

It’s always exciting when there are new products on the horizon. Please remember too that all US FDA-approved drugs are considered both safe and effective for treatment of bleeding for VWD patients.

The Baxter study will assess a minimum of 36 patients in trial sites in the United States, Canada, Europe, Australia, Japan and India. Information about the trial including enrollment is available at www.clinicaltrials.gov or by calling 1-805-372-3322.

I am quite sure, that when and if the product hits the market, Baxter will think of a catchy name for BAX 111!

For more info, call Marie Kennedy, (805) 372-3543– I know her and she is a very trusted source and nice person!

Interesting Book I Just Read
The Nine Rooms of Happiness
by Lucy Danziger and Catherine Birndorf

This perky, feel-good book uses a clever metaphor for getting women to think about their life, stress level and aspirations: think of your life as a house, and each segment of your emotional life is a room. Basement (memories, childhood), Family room (family), living room (friends, relationships), bathroom (self-esteem, health) etc. In which room are you? Where do you have the most problems? Is your bathroom too close to your family room? In a sense, the authors are asking us to compartmentalize, ironically a task usually associated with men. The authors use real life vignettes from women of varying backgrounds and situations to reveal some universal anxieties women share, and then applying the “house” metaphor to show how they can get unstuck from their unhappy situation, and move into a different room, and therefore happiness.

Sound simplistic? It is. The book is okay for those new to the self-help genre and studying relationship and introspection; I think they will read it and come away feeling understood, optimistic and less alone with their unhappiness. But to someone who is well versed in more serious relationship books (Harriet Learner has excellent ones), this is psycho-lite. The book is based on many presuppositions: woman must have female friends, you must keep old friends in order to be happy (even if they drive you batty?), women are prone to anxieties, women are unhappy. I found the book putting much blame on women for their condition, which I am sure the authors didn’t intend! For example, why should a woman be made to feel in “denial” about getting older, or narcissistic because she tires of her long-time friends who are aging, speaking about grave plots, and do nothing to engage in life, while she is full of spirit and wants to take on life and adventures? Why is that a “problem,” as the authors clearly state? They insist she needs to keep these stick-in-the-mud friends while cultivating new friends. What is she doesn’t have time? What if some people really are just jerks and not just a result of a relationship problem stemming from “regression,” or “transference” or “denial”? The authors seem to have a psycho answer for everything, and not a street-smart, pragmatic way of viewing relationships.

A cookie cutter response to each vignette wears thin, as do the clichés, which run rampant (oops, there I just did it) in the book. “To have a relationship, you first have to relate” –really? The model is a clever idea, using a house, and no doubt some will feel helped by this book. It’s gotten pretty mixed reviews. Maybe good for novices, but when you finish this, move on to some serious relationship books, as this one is pop-psychology, cutesy and sends mixed messages. If you challenge the presuppositions, half the book is sunk. Two stars.