Hi Folks.

As some of you know, after having ADR in June of 2004, I started this community to support spine patients. Realizing there is an incredible amount of work that must be done to help you all, I decided to transform ADRSupport into something more comprehensive and effective. Last year, I filed the necessary paperwork with the state of Mass. and with the IRS. On Friday, I was notified by the IRS that the Arthroplasty Patient Foundation is now an official 501 c 3 non-profit organization. This is obviously a huge milestone for this community and I am proud to be making this step towards positive changes for spine patients!

Therefore, in the spirit of progress and forging ahead, I want to single out a few people that have made generous donations (while asking for more!).

Many thanks to Ernie, Glenn, Kristina, Tim, Bill, Mary, Sharman and Mark. And in 2006, many thanks to “Sir” Alastair, Kimberly, Glenn, Justin, Kathleen, Crystal, Patrick, Jennifer, Rachel, Laura, Hope, and Florian. And a huge thanks to the largest donor of all time – Dave Webster! Just yesterday, Dan offered to donate a complete office computer, which will make me more productive, while minimizing the cursing at my antiquated (Win2000) PC.

Many thanks to all of you for your generosity, which have covered legal (filing) fees so far. For those if you that are not suffering financially, if you can help OUR cause going forward, your tax-deductible donation can be made via Paypal, found at: http://www.adrsupport.org/donations.html

I’ll work hard to advocate for spine patients. As a first step, some of you will be seeing me soon as I visit patients in the northeast for video interviews. This will be the first in a series of themed patient education DVDs.

In the meantime, I’ll be working on “all the other” things that we need to do – like getting the word out to the media. Below, see the letter I recently wrote to the Wall Street Journal (yet unpublished).
__________________________________________

July 20, 2007

Wall Street Journal
New York, New York
Attn: Editorial Staff

Dear Editors,

Ms. Herzlinger’s article regarding the lack of innovation in healthcare is insightful and incisive. The picture she paints is all too familiar to many of us who pay hefty premiums to our health insurers every month. As a patient advocate, I have witnessed countless spine patients held hostage to pain because of their insurance company’s unwillingness to pay for their care. Herzlinger is flawless in her reasoning: We need prescriptive remedies.

The first priority is to fix the gaping holes in the coverage offered by private insurance, which denies payment for modern surgical procedures. For example, I received the Charite artificial disc replacement in June of 2004, shortly before FDA approval of this procedure in October 2004. Thankfully, I recovered quickly and completely, because I needed all the strength I could muster to battle my HMO for reimbursement for the procedure that restored my quality of my life.

My new organization, the Arthroplasty Patient Foundation, helps patients find and research modern spinal treatments. Since many insurance companies are not paying for the FDA-approved disc replacement procedure, patients are forced to prolong their disability or pressured into having spinal fusion, which often causes other discs to degenerate. This absurd coverage gap has led hundreds of patients to mortgage their houses to pay for artificial disc replacement. Still others fly overseas for lower cost disc replacement, which is often an adventure fraught with greater risks than just staying in this country and undergoing the treatment most likely to yield a good outcome.

Perhaps the legislators and insurance companies have built a “mighty fortress” that is resistant to change, but we can still work within our legal rights to make necessary improvements that will help thousands of patients get back on their feet and become productive citizens once again. By implementing overdue changes through Congress, we can help disabled people return to work and help unburden the system from $1.8 trillion of medical costs.

Let’s not forget about the many thousands of patients with insurance who are left behind; and focus on these cruel gaps in insurance coverage. Lest we forget, these “healthcare hostages” need our help in getting their voices heard!

(Editors, please note: see the patient stories I compiled for the press & media: Insurance Nightmares Abound).

Sincerely,

Richard J. Longland

Founder & Principal
Arthroplasty Patient Foundation, Inc.
Woburn, Mass. 01801

Congrats on obtaining tax exempt status for the Arthroplasty Patient Foundation! This is indeed a huge milestone for the community!

Can you tell me more about the video interviews you will be doing?

Congrats! http://adrsupport.org/groupee_common...on_biggrin.gif

Justin

Congratulations and well done!!

You have worked hard for this for "Others "

Best
Alastair http://adrsupport.org/groupee_common...icon_smile.gif http://adrsupport.org/groupee_common...icon_smile.gif http://adrsupport.org/groupee_common...icon_smile.gif

Thank you all. Karin, the videos that will be made are intended to be key resources for patients. So, the real question is – what do patients need to know to help make decisions about how to get better?! We all have ideas about this – and they are all good! The trick is to how to aggregate and edit them into an accessible DVD. And we have (most) of this figured out.

Of course, there are millions of things to ask, assimilate, question and learn about before making decisions.

That said, the general themes are generally these areas:

1. Insurance appeals (need I say more?).
2. Lessons learned during the entire process (info gathering, doctors visits, choosing doctors, choosing the “hardware,” etc.).
3. Your top advice for other patients, e.g., “if I were to do this over again…”
4. Problem-solving ideas and resources for patients, both pre and post-operatively; e.g. resolving pain syndromes, tips for post-op recovery (exercise, stretching, massage, diet, etc.).
5. Your opinion. Patients have so much to say that is unsaid – even on this forum. I’d like to allot some time for each individual to shine through with their say about whatever they wish to share or convey to the global audience of patients.

As we are in now in the age of youtube (even our government officials understand this, for better or for worse http://adrsupport.org/groupee_common.../icon_razz.gif), I was wondering if people would want to produce their own videos and send them to me for this project. If I hear positive responses from patients, I’ll plan out the details and make the next steps happen.

Karin, thanks for asking and caring. And BTW: Poughkeepsie aint that far from Boston! http://adrsupport.org/groupee_common...icon_smile.gif

Congratulations Harrison! This forum is brilliant (it's where Alastair found and 'rescued' me) and it seems you have reached an important milestone.

I've just read some of the stories sent to Oprah - I hadn't realised how difficult things are for US spine patients. In the UK we are always complaining about our National Health Service and health insurance companies (and there are certainly reasons to complain) but perhaps we don't realise how lucky we are.

I wish those of you who are fighting your insurance companies to pay for ADR strength to continue the battle and hope for a successful outcome.

Congratulations, Harrison! You put lots of work into this.

Jane