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Sunday, November 16, 2008

NHF's New Direction, Movie

Lana and Laurie




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 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 homecare 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. Held at the Hyatt Regency, the venue was easy to navigate, especially for those with disabilities.

I have been attending NHF meeting since 1990, 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.

Please read more about the Campaign for the Future at NHF's website: http://www.hemophilia.org

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.


3 comments :

Anonymous said...

1. Do you have an opinion on HR 676, the Conyers bill in Congress for a single payer national health insurance program which would cover everything with no copays, deductibles, coinsurance, or premiums paid by the patient?

It sounds good to me.

2. Did NHF say anything about it?

Laurie said...

Good questions: I did not hear about it and will ask our readers. Did any attending NHF hear about this bill?

Nathan Wilkes said...

It didn't come up in any of the sessions I went to. NHF staffers that I have discussed HR 676 with are all friendly towards it, and they should be. In fact, everyone in the hemophilia community should be wild advocates for HR 676. I discovered HR 676 a little over a couple of years ago after 3 years of researching everything that is wrong with the US healthcare 'market' (it is not a 'system'), coming up with my own solution, and then discovering that Rep. John Conyers already had a bill...

I was even the primary consumer/patient representative speaking at the Press Conference when HR 676 was 'dropped in the hopper' in January 2007. Bills have to be reintroduced every 2 years to survive, and HR 676 was reintroduced by Conyers last week with some minor changes.

It guarantees quality, comprehensive health care to everyone in the US with no pre-existing condition exclusions, no employment requirements, no provider restrictions, no exorbitant premiums, no lifetime caps, no risk of medical bankruptcy.

It does all of this and more for substantially less (hundreds of billions of $$$ less) than what we pay for health care today. It does this primarily by eliminating the wasteful insurance company middlemen and eliminating waste created by underwriting and denial of care. (This waste consumes over 31 cents of every health care dollar spent today.)

It would institute a universal health IT system, so that your personal health records would be available at any doctor, hospital or provider you visit in the US. It would fold in Medicare, Medicaid, and other disparate systems into one grand model of efficiency. It would also enable negotiation with pharmaceutical manufacturers for lower drug prices.

I always put in a personal plug for it during my legislative visits at Washington Days, and I'm working on getting broader support at the organizational level (of NHF, HFA, etc.).

You should keep in mind that many nonprofits dealing with chronic diseases (e.g. cancer, diabetes, etc.) get most of their funding directly from the pharmaceutical companies that have a vested interest in maintaining the illness and the status quo. Because many such organizations would not exist without the disease itself (and ridiculous profits of the pharma companies), a lot of them are hesitant to support HR 676 publicly. I'm not saying NHF falls into this category, but I have seen other disease groups following this logic.

But 'We The People' should be knocking down the doors at the Capitol (and White House) to get HR 676 passed ASAP.

I can provide more information, or you can review sites such as guaranteedhealthcare.org, healthcare-now.org, and pnhp.org, all of which have a wealth of detailed information.

 
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