posted
Hi, I was just on the CALDA webite and saw all the RI has been able to accomplish for Lyme disease patients. Does anyone know how they were able to do it?
I feel like it seems they have laid the groundwork, so if we follow their steps prehaps we could accomplish this in other states. Wondering what steps they took to get this accomplished? If anyone has any ideas?
Thanks, Ann
-------------------- If you keep doing nothing...nothing changes!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Although the attempt was nobel... all who work to help us should be praised.... but...
With legislation.. all that glitters is not gold.
Foe example... a quote from a letter by LDA.. who helped with the efforts on that bill...
"Dr Charles Ray Jones, Connecticut pediatrician addresses the following to the Rhode Island Commission.
He has treated over 6,000 children with Lyme, three-quarters are well after 3 months to seven years of treatment, averaging nine months to two years.
The remaining one-quarter is still receiving treatment.
"Most of these children have been denied insurance coverage of necessary antibiotic therapy because of .Bill#7032.
It was easier to obtain insurance coverage for antibiotic therapy for Lyme disease patients prior to the bill... Educate. Do not legislate."
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Here is another one...
"Enclosed is a letter of treatment denial for a seven year-old who has a brain SPECT with sever hypoperfusion, Western Blot with specific Lyme bands, and neuropsych testing supporting the Lyme diagnosis.
The law is cited by the insurance company as a basis for denial of coverage despite a letter of medical necessity from the treating pediatrician, as the parents are unable to find pediatric specialists in the mandated areas.
According to the mom, "I've been in contact with assistant Attorney General since the beginning of January. He agrees the law was never intended to be used this way [and] has been in contact with Connecticare over this issue but is not hopeful that anything will change."
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CT passed something a while back too... but it requires patients to be seen by a board certified ID duck, rheumy or neurologist before they can get more treatment.
Problem is.. how many ID ducks or rheumy's or neuro's WILL treat beyond the minimum?
Heck.. they are the three worst fields to go to if you have Lyme.. with 2 out of the three having written their own guidelines against treating.
Sooooooooooooo... as Dr. Jones said... "Educate before you legislate".
And even then things can go VERY badly... and what you do can destroy lives.. even though you have the best intentions.
My thought is the BEST we can do is to get the federal bill passed. It doesn't change just one rule here or there.. it gives us the ability to have a voice so we can make BIG changes for all over the place.
If we can address the source.. like provided for in the federal bill, the changes will come.
But that is just my opinion.
This is a good read.. if you care to take a look-see.
posted
Let's not mix up Rhode Island and Connecticut legislation. Rhode Island's law is good.
I applaud the team that got it done in Rhode Island. Not sure it can be replicated elsewhere.
Posts: 79 | From Rhode Island | Registered: Jun 2008
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posted
I was under the impression that the insurers got at the RI bill at the last minute and that people in the state were still having problems. As in no one will treat them. Correct? Incorrect?
Posts: 8430 | From Not available | Registered: Oct 2000
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quote:Originally posted by lakes592: Hi, I was just on the CALDA webite and saw all the RI has been able to accomplish for Lyme disease patients. Does anyone know how they were able to do it?
I feel like it seems they have laid the groundwork, so if we follow their steps prehaps we could accomplish this in other states. Wondering what steps they took to get this accomplished? If anyone has any ideas?
Thanks, Ann
Hi Ann,
I'm writing here as a Rhode Island resident who assisted with getting that bill passed. I am not writing in any official capacity as a member of the LDA's Rhode Island Chapter. In fact, I am not now an active member of the LDA's Rhode Island Chapter.
Briefly, one thing about Rhode Island at that time (2004) was that a relative of the RI Governor's Chief of Staff suffered from a terrible case of Lyme disease and co-infections. As Chief of Staff, he was able to convince the then Governor (Lincoln Almond) to form a Commission to study Lyme disease in RI.
The commission was chaired by Governor Almond's Chief of Staff, Joseph Larisa. As Chair of the Commission, Joseph Larisa was able to keep the focus on what patients needed and was also able to minimize the impact of members of the Commission who did not feel Lyme was a serious problem. (I can't remember all that Mr. Larisa did on behalf of Lyme patients and I apologize here for any omissions.)
You can read all about Governor Almond's Lyme Commission (.pdf file) in a report they submitted after they had finished their work. One end result of the Commission was the successful passage of legislation.
To answer your question, I have to say that a large amount of credit for the legislation to be passed was due to Joseph Larisa. He was invaluable for his ability to shepherd the legislation throughout the bill-making process.
And still, it wasn't a one person operation. There were several strong relationships between constituents with Lyme and their State Senators and Representatives which were also crucial. There were legislators who had personal experiences with the complications of Lyme disease as well. A strong email campaign as the bill worked it's way from committee to floor votes was also important. In the end, I remember a legislator remarking that he had never before heard from so many constituents on a single piece of legislation. I also can not forget the strong level of support from patients who lived outside Rhode Island who participated in the email campaign.
So, in answer to your question,
quote: Does anyone know how they were able to do it?
I hope I've given you at least part of the answer.
This should not be interpreted as the only way to get legislation passed is to have relatives and friends who have powerful political connections!
I think that what can be learned here is that when a legislative avenue is chosen for redress, cultivating relationships with your elected officials is crucial.
By having a close relative of a Lyme patient in a very influential and powerful political position, Rhode Island was able to achieve very much in a much shorter time.
Rick Laferriere
-------------------- Co-Moderator, LymeInfo yahoogroup. Posts: 5 | From Rhode Island | Registered: Jul 2007
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pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
You can look back at the archival issues of the Lyme Times and get more details of the RI story. Joe Larisa was indeed the key player. Anyone else have a close relative as chief of staff to their governor? If so, don't delay! Start your state legislation today!
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
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