ADR Support group now a Foundation!

Here's their latest update. Kudos to "Harrison" aka Richard Longland, who started it.

"As fall is almost here, I wanted to update you on important issues that I’ve spent time working on this summer. Forgive me, but this is a long but important message.



Insurance Appeals. The overwhelming majority of our members have suffered through the insurance appeal process. While many fight aggressively against their insurers with frenzied letter writing, few patients engage their state Insurance Commission or Offices for Patient Protection (OPP). If you engage the OPP, an independent third-party consultant will review your entire appeal. In the state of Mass., there was only one appeal per year filed with the OPP! One case was even overturned against Blue Cross Blue Shield! Using the FOI Act, I reviewed all the cases submitted to the OPP since 2004 and was shocked by the small number of cases; as well as the variability in appeal formats and judgments (next topic).



NAIRO. The National Association of Independent Review Organizations defines the methodologies that independent third party reviewers use to assess the legitimacy of your claim. After I reviewed the patients’ appeals from the OPP, I was very concerned about the differences among them -- in the formats and outcomes –- and also:



The scientific papers cited within the patient’s appeal;
The papers that are cited by the “experts” hired or employed by the third-party reviewer (as described in the reply to the appeal);
The medical professionals that are chosen to be part of the review process.


Accordingly, I engaged the president of the organization who has been kind enough to review my concerns. Hopefully, this will start a furtive dialogue that will lead to instructive changes for us patients!



Insurance Mandate. There have been a few ADR-friendly changes with insurance companies policies, but we still have a long way to go. Working through my state representative, I am planning to plead our case at the state house. The goal is to create a bill (or some kind of strategy) that requires insurance companies to cover FDA-approved arthroplasty procedures.



While this effort may be good, I have no misconceptions about its chances. Of the 6500 bills that were heard, 50 made it through the lengthy process of reviews (.7 %)! And as of this writing, there is a 16 month backlog. Nonetheless, nothing ventured, nothing gained!



Fundraising. Most spine patients are in dire straits, afflicted by pain and a litany of other troubles that accompany a disability. Few have the dollars to spare for donations, which is why I don’t like asking for handouts! So perhaps you all may consider “plan B”… getting your employer involved!



You may be wondering how this could work. Well, whether your company is large or small, here’s how you and your employer could help:



Some companies will match your tax-deductible donation to a non-profit charity (we are now a 501 c 3 with official IRS status). Even if your company does not have this official policy, some will still match your donation – just ask your CFO, controller of financial executive.


Many of you work at Fortune 500 companies, which are more familiar with making donations to charities. I’ve created a presentation and grant request specifically to solicit donations from corporations, and I can present via Internet or in person to the potential donors.


If you were out of work because of your spine problem and have since returned, you can be a real champion for our cause. All I need is an introduction from you to get me started! Email or call anytime to discuss our next steps.



Quick Survey. Many of you have already seen the simple one-question survey I posted asking patients about how many of their spine levels are problematic. The results are both sad and revealing, as it shows that many people have serious, multi-level disc disease. Please take the survey at your earliest convenience.



Spine Pathologies. Some of you may have seen the recent posts discussing pathogens possible role in disc diseases. In the survey topic mentioned above, I posted an article “Modic changes, possible causes and relation to low back pain,” which is interesting on so many levels (pun intended). This article implies that more specific diagnoses of spinal problems could lead to other (and arguably more effective) treatments. I was particularly happy to see immunological conditions singled out and discussed with specificity. I hope we see many more scientific research and papers in this area.



Candid Camera. Actually, high-definition camera…is coming to you! If you live in the northeast, I’d like to get your candid thoughts about the entire patient experience – or what I sometimes call the “good, bad and the ugly.” These video interviews are primarily for patient education, but I believe that patients will reveal interesting insights appropriate for a diverse audience. This high-quality production will be made available in 2008 as a DVD for purchase. Would you like to be on candid camera? Drop me a line or an email!



I hope this communication was informative. Please feel free to email me or reply in this topic on the discussion board. By the way, “Harrison” is my screen name, my actual name and contact info is below.



Peace to you and your family. Thank you.





Richard J. Longland "



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Here I linked to an article in the times that discussed Medicare’s decision not to cover ADR surgery in patients over 60. As it turns out, this is not good news for ANYONE needing ADR, and possibly even fusion. Here’s why.

During my last check up, Theresa mentioned that the pace of their surgery schedule has really slowed as many/most insurance companies are now not paying for the type of surgery I got, that is, ADR combined with a fusion. They’ve narrowed the range of what is covered by adding the stipulation that there can be no other existing conditions, so if a patient needs ONE disc replaced and that’s it, ok. People like me who needed a fusion and a new disc would be shit out of luck. Thank goodness that I got my surgery when I did, as I can’t even think what the outcome might have been if I’d had to wait for even a few more months.

On top of that, I’ve been reading with interest the health care proposals of the three leading democratic presidential candidates (Clinton, Obama, and Edwards). They all seem to include/favor the formation of some kind of “institute” that would research the most effective treatments for the most common (read:expensive) health care issues.

From the NYTimes:

"Along these lines, the three leading Democratic candidates have quietly come up with nearly identical ideas. Deep inside their health care plans, Mrs. Clinton, Mr. Edwards and Mr. Obama have each called for the creation of a national institute to figure out which kinds of medical care actually work. This institute would sort through the scientific research on, say, spinal fusion and help people understand when it may make sense and when it’s likely to be just another big medical expense that doesn’t solve anything."

As back pain is one of the major health care costs, lumbar fusion and I suppose ADR, though the article didn’t specifically mention it, would be researched for their efficacy. Apparently there are some studies that show that fusion is, in some cases, no more successful in treating back pain than other methods. While this is true, and I'm not advocating that anyone and everyone who requests a spinal fusion should be able to get one, I am afraid that the insurance companies will seize on any study that supports a conclusion that means they don’t have to pay for a procedure. The Times article goes on to state that Medicare and the insurance companies would then use the research to “determine when a procedure or a drug would be covered” (read: they’d use the research to deny coverage).

Of course, this is all just my opinion, and wouldn't it be nice if I were proven wrong, but if there's anything I've learned in the past year or so, it's that insurance companies are pretty predictable when it comes to cutting what they cover and putting more of the insurance premiums we pay into their own pockets.