27 Weeks: The IDSA Rules, I Fight for Coverage

Many of you watched the movie Under Our Skin which made you acutely aware of the controversy surrounding Chronic Lyme disease. Despite valiant efforts by the Attorney General of Connecticut and the Lyme community, the Infectious Disease Society of America made a decision on Thursday April 22nd to uphold its 2006 guidelines.


On the same day that these guidelines were upheld, I received a call from my home care nurse that Medical Assistance had denied any further home care visits.  I had my last visit from Jess yesterday, which the home care agency did despite the fact that the visit was not covered. At this point I'm in complete limbo as to where we go from here. Right now, I am waiting to hear if I could possibly be covered as an outpatient to get my port accessed weekly. I have two weeks of Rocephin left, after which we will wait to see if that is covered or denied when the new script is put through. So, I currently have an accessed port and no idea how or where I'll be getting it deaccessed and reaccessed when Monday rolls around. There will likely be last minute scrambling, but we have to keep our fingers crossed that I will get outpatient coverage.


It's been incredibly stressful, draining, time-consuming, overwhelming, frustrating, maddening and frightening. Many tears have been shed. I've done a bit too much 'catastrophizing'. At this time, I am just asking for your good thoughts and prayers while we try to navigate a way for me to continue treatment. I'm literally too exhausted to get into the emotional side of this all in a post right now. Until I hear back from MA about the next request, I can only wait. 


I've been trying to keep up with reading and understanding all of the intricacies of the IDSA decision, but it is very, very complex.  I know that some of my friends and family are also struggling to understand the decision and why it is such a huge deal in the Lyme community. A couple of tips: If you haven't already seen Under Our Skin, please consider renting it via Netflix, checking it out of your local library or borrowing a copy from me (I have copies to lend through the mail). You will not be bored! Also, on the right hand side of my blog are links to two very helpful blogs:  Those through CALDA (California Lyme Disease Association of America) and that of the folks at Under Our Skin (The latest post is a powerful bit in response to the IDSA from Jordan Fisher-Smith, one of the central people featured in the movie).


The bottom line is that patients will continue to have great difficulty getting treated. People will continue to go undiagnosed for years and even die. The doctors who treat us have to continue to risk their careers. I truly believe that because this hearing was so public, the insurance companies will continue to crack down even more so on Lyme patients seeking coverage of antibiotics. I don't think it is a coincidence that I received my denial the same day that the IDSA released their 'new' guidelines.


A couple of people have asked who to write to and what to do regarding the IDSA's decision. I have cut and pasted below the information I received from CALDA (California Lyme Disease Association of America). This seems to be the standard letter that the Lyme groups are requesting we send to the Attorney General of Connecticut. CALDA is a fantastic organization.


If you are interested, the information and a short explanation of the decision is below. I just did it via email and it literally took me TWO minutes. I don't know if I'll get any more coverage for my care, but maybe if we all speak up, this won't keep happening to people with Lyme disease.


I'm sick to my stomach over the entire thing. The latest IDSA setback is a travesty. If I am able to blog through the herxing and trying to sort out medical stuff, I will try to explain more about what this decision means in general, and what it means to me. In the meantime if you are able, please take two minutes to contact the Attorney General of Connecticut.


Blessings and Thank You for contacting the Attorney General!


Emily

CALDA Action Alert:

The IDSA Lyme review panel has released its report. The committee voted to make NO CHANGES to the 2006 Lyme guidelines. These are the guidelines that say no clinical judgment for physicians, no antibiotic treatment for chronic Lyme, and no alternative treatments or supplements. These are the guidelines that abandon sick Lyme patients and leave them nowhere to turn for help.

Why we all need to contact AG Blumenthal now:

The review process for the 2006 IDSA Lyme guidelines came about because of a Settlement Agreement with Connecticut Attorney General Richard Blumenthal. But the IDSA didn't follow all the procedures laid down in that agreement. If they had, one of the worst of the guidelines would have been thrown out. The recommendation in question requires that a patient have a positive Lyme lab test in order to be diagnosed with Lyme disease. Since Lyme lab tests are notoriously unreliable, this requirement denies appropriate diagnosis and treatment to untold thousands of patients with Lyme disease.

Contact AG Blumenthal and tell him you want him to make sure the IDSA follows all the rules. The lives of Lyme patients and their families are at stake.

If you can, please fax the AG. If no fax, email or call.
(860) 808-5387 Fax
(860) 808-5040 Phone
email: attorney.general@po.state.ct.us

SAMPLE LETTER:

Dear Attorney General Blumenthal:


The IDSA panel did not comply with the voting requirements of your Settlement Agreement for a critical recommendation in the guidelines--the need for a positive lab test before patients can be treated. In fact, Lyme lab tests are insensitive and miss many cases of Lyme. The IDSA sidesteps the need to follow your rules by claiming that this point is not really a recommendation. In fact, it is a strong recommendation, repeated throughout the guidelines and relied upon by insurance companies to deny treatment reimbursements to seriously ill patients. It should be subject to the same voting procedures as every other recommendation in the IDSA guidelines.


Please hold the IDSA to the Settlement Agreement and require them to re-do the vote on lab tests. The health and well-being of patients and their families depends upon it.


Sincerely,

(your name. Add personal details if you like.)

SAMPLE PHONE MESSAGE

I'm calling today because an injustice is being done to Lyme patients everywhere. Please keep investigating the IDSA, and make sure they follow the rules.

For updated information on about the IDSA guidelines, subscribe to the Lyme Policy Wonk blog (The link to the CALDA blogs is on the sidebar of my blog, along with other important Lyme-related blogs such as Under Our Skin.)