Sunday, January 30, 2011

Where's The Money? Well... where's the Action?

EDIT: WPI and by extension its activism wing ANIDA have been discredited recently. I do not advise donations or membership in these organisations unless they successfully restore a badly damaged reputation. 26 Feb 2012

The announcement that the WPI clinic, planned to open in May, must charge patients directly for services, and can not bill insurance, was no surprise to many but was certainly a disappointment to some.

I had hoped that the WPI's affiliation with a state university might give it easy access to Medicaid and Medicare billing, as some other clinics on the same campus are able to bill those insurers. Of course as Dr. Jamie so well explained the situation, the treatment anticipated at WPI is not the sort that any insurance, least of all those for the poor and disabled, might cover.

I have been sad to see one or two comments in some places accusing WPI of being out to make a buck, but it's hard to believe anyone could fail to understand that the research needs to be supported somehow. However, in the face of grants not being granted, patient contributions and patient fees can't be the only sources.

I have not complained but have asked, and upon getting answers I have commented and blogged, encouraging people to support and contribute to WPI and to do all they can to promote widespread understanding and concern.

We need a broader base than just patients and our immediate advocates, to support research and the creation of more clinics and more access as soon as possible. The sad truth is that while people wait for treatment, and wait, and wait, some die and more become ill. We are so close now. Effective treatments have been found and need only be clinically tested and approved. Sounds close but could be years.

We need to use our outside voices to get some action from the people, to multiply the voices demanding action from governments as well as to increase individual contributions and even to increase the likelihood that private foundations will make grants.

Private foundation grants as well as government grants are more likely to be forthcoming if the disease is given a higher and more credible profile than it has had in the past. There are private foundations which offer major support specifically for innovative treatment that can be replicated. Innovative treatment and a plan to help others replicate that in other clinics, is exactly what the WPI has planned. Exactly what the big money grants are always looking for. But those foundations like to have popular causes in their profiles of grants. ME/cfs needs to be made a more popular cause.

How to make the cause popular? How to get anyone to listen and care? Again, patients---exhausted and in pain---are not to be looked to, to do all the work. Patients have been begging for attention for decades. How to mobilize more healthy people? That's the question.


  1. Yes — how to mobilize more healthy people — is a question that desperately needs answering. I wish I had the answer.

    Thanks for blogging about this.

  2. How to make our cause a popular one.... I don't know the answer either. I guess we just keep trying to spread the word, throw it out there and hope enough information sticks at some point. Thank you for your thoughtful post.

  3. Thanks, Kassy. I like where you're going with this. You have that grant writer background so you would know! I like the idea of healthy people helping advocate (ala Chris Cairns - look how much he does?) And also and I don't know where you said it, maybe not here, but that WPI really needs to get a professional fundraising specialist and go after the big bucks from private or government contacts. Funding the clinic through patients self paying is not going to give them the money they need. I would think they have this sort of person or team...I hope so. Just that we never hear about it.

    anyway thanks. i've been enjoying your comments and posts recently! Right on the Money! :)

  4. Hillary Johnson said in her talk called The Why, a couple years back, that for AIDS, the Quilt was the game-changer. That's why Siobhan McElwee and I started Sock It 2 ME/cfs (or "the sock project"). We thought it might be sufficiently quirky and artistic to catch the media's eye and bring our disease further into the spotlight. Engaging, warm, like the Quilt. But we haven't got the energy to get that project off the ground. Lots of patients are interested and like the idea, but once again we get mired in being too ill and too exhausted to make things happen. The socks could have gone to the WHO meeting in Geneva and then on to the NIH, this Spring, but there just wasn't enough input of socks and energy to make it happen. Where are the healthy friends who should be helping every patient? Why did AIDS patients get help acting up, and we don't? Sorry... just more questions.

  5. I think WPI is big enough to do mass mailings for solicitations to health related mailing lists. Patients could sell candy or pens. They have done a great job, and patients want to help but it is time to grow into a bigger fundraising effort. could be 7% of population. It would be great if we had some patient reps to meet with WPI for fundraising ideas. Kathy P

  6. That's right, Kassy; surely the WPI has someone who is actively working on this and not just the annual fundraiser. They cannot expect patients to give enough to support the millions needed. In lieu of support from our families and friends, which we have never had in abundance, grants from foundations are the only way to go if the NIH is going to ignore them.

    It also does seem another form of discrimination that other clinics at the University of Nevada will accept 'Care and 'Caid, and the WPI cannot.

    There are some critical meetings coming up in Feb., April and May, in which we can al take part to insist vociferously for NIH funding to the WPI. It should be our major goal in all we do.