LEGISLATION to mandate coverage for IVIG

[pandas mom]

Our DD 7 has had PANDAS/PANS since 2010. She recovered fully with antibiotics after onset (strep). Second round of illness (shingles, mono, Lyme) left us with IVIg as the treatment of choice by her drs. Harvard Pilgrim declined after months of battles, including two appeals. They declined on the basis that the second exacerbation was not strep related. It was a wretched process- one many of you have endured. We contacted local politicians at the time, and one local representative has filed legislation, which would require Massachusetts insurance companies to pay for IVIg for kids with PANDAS/PANS. It’s a long shot and a lengthy process, but it feels good to at least try. In addition, he has conditioned an act to create an awareness day for PANDAS/PANS.

 

We have only three days to gather support, so here is what his aide has requested:

 

“The best way to gain support at this point is to contact your network of other PANDAS/PANS families and ask them to call their state representatives and senators. Basically the message is - "Rep. Scibak has filed HD3192 and HD2669 and these bills are important to my family for the following reasons. I ask that you considering signing on as a co-sponsor." The deadline to add co-sponsors is 2/1 at 5PM.

After that deadline, we wait until the House Clerk assigns every piece of legislation filed to a committee.”

 

Any efforts you could make on the behalf of this legislation would be appreciated.

Best, Heather

[pr40]

Hi Pandas mom,

I am in New Hampshire. Can I write to anyone in Mass?

I happen to have HP too.

[Kathy4Him]

I do not live in Mass. but think you should post this on FB pandas/pans page to get more support...or saving sammy fb page. Hopefully it will pass and more states will follow.

[KaraM]

DH is a MA Rep....will forward this on for sure!!! Hopefully he can call in some chits...

 

Our DD 7 has had PANDAS/PANS since 2010. She recovered fully with antibiotics after onset (strep). Second round of illness (shingles, mono, Lyme) left us with IVIg as the treatment of choice by her drs. Harvard Pilgrim declined after months of battles, including two appeals. They declined on the basis that the second exacerbation was not strep related. It was a wretched process- one many of you have endured. We contacted local politicians at the time, and one local representative has filed legislation, which would require Massachusetts insurance companies to pay for IVIg for kids with PANDAS/PANS. It's a long shot and a lengthy process, but it feels good to at least try. In addition, he has conditioned an act to create an awareness day for PANDAS/PANS.

 

We have only three days to gather support, so here is what his aide has requested:

 

"The best way to gain support at this point is to contact your network of other PANDAS/PANS families and ask them to call their state representatives and senators. Basically the message is - "Rep. Scibak has filed HD3192 and HD2669 and these bills are important to my family for the following reasons. I ask that you considering signing on as a co-sponsor." The deadline to add co-sponsors is 2/1 at 5PM.

After that deadline, we wait until the House Clerk assigns every piece of legislation filed to a committee."

 

Any efforts you could make on the behalf of this legislation would be appreciated.

Best, Heather

Edited January 29, 2013 by KaraM

[pandas mom]

Thank you!!!

DH is a MA Rep....will forward this on for sure!!! Hopefully he can call in some chits...

 

Our DD 7 has had PANDAS/PANS since 2010. She recovered fully with antibiotics after onset (strep). Second round of illness (shingles, mono, Lyme) left us with IVIg as the treatment of choice by her drs. Harvard Pilgrim declined after months of battles, including two appeals. They declined on the basis that the second exacerbation was not strep related. It was a wretched process- one many of you have endured. We contacted local politicians at the time, and one local representative has filed legislation, which would require Massachusetts insurance companies to pay for IVIg for kids with PANDAS/PANS. It's a long shot and a lengthy process, but it feels good to at least try. In addition, he has conditioned an act to create an awareness day for PANDAS/PANS.

 

We have only three days to gather support, so here is what his aide has requested:

 

"The best way to gain support at this point is to contact your network of other PANDAS/PANS families and ask them to call their state representatives and senators. Basically the message is - "Rep. Scibak has filed HD3192 and HD2669 and these bills are important to my family for the following reasons. I ask that you considering signing on as a co-sponsor." The deadline to add co-sponsors is 2/1 at 5PM.

After that deadline, we wait until the House Clerk assigns every piece of legislation filed to a committee."

 

Any efforts you could make on the behalf of this legislation would be appreciated.

Best, Heather

[KaraM]

He co sponsored the bill today!!

And he'll talk with some of his colleagues as well!!

Edited January 29, 2013 by KaraM

[LNN]

Kara - Pls tell him :) :wub: :)

[StillHopeful]

Are you just looking for MA state residents to take action? Is there an MA support group that you can contact? FYI I am in NY.

[pandas mom]

I apologize if this results in a double-posting...

 

Hi

The deadline for co-sponsoring Representative John Scibak’s

PANDAS/PANS legislation is fast approaching (Friday at 5PM). The

following Legislators have co-sponsored Representative Scibak’s bill.

 

Rep. John Keenan (Salem)

Rep. Peter Kocot (Northampton)

Rep. Ellen Story (Amherst)

Senator Stan Rosenberg

 

The following is a link to names, email addresses, and phone numbers

for members of the Massachusetts House of Representatives. Please feel

free to call the above legislators to thank them for their support,

but more importantly make sure you call the other representatives that

have not yet signed onto the bill. While I have been told that there

is no direct correlation between co-sponsor numbers and the final

disposition of a bill, every additional legislator that signs on is

one more informed politician that will help us to build the momentum

to put the control of our children’s medical treatments back in the

hands of our dedicated PANDAS doctors and out of the reach of

insurance companies.

 

http://www.malegislature.gov/people/house

 

If you are interested in having your friends, family, or colleagues

write a quick email to their local representative, feel free to

use/tweak the following template letter. However, I have found that a

phone call is a much more powerful tool. Ask to speak to the

Legislative Director or the staffer that handles health-care related

issues.

 

Thanks for your support. jacob

 

 

Dear Representative __________

 

Representative John Scibak of the Second Hampshire District has filed

the following bills for the upcoming legislative session. These bills

address children affected by PANDAS (Pediatric Autoimmune

Neuropsychiatric Disorders Associated with Streptococcus infections)

and PANS (Pediatric Acute-Onset Neuropsychiatric Syndrome).

 

House Docket #3192 An Act designating PANDAS/PANS Awareness Day

 

House Docket #2669 An Act relative to insurance coverage for PANDAS/PANS

 

I would greatly appreciate your co-sponsorship of these important

bills. By co-sponsoring these bills you will help children and their

families struggling with this disorder by providing them with the

opportunity to pursue the therapeutic recommendations of their

doctors. Currently, many of these children are denied access to IVIg

(Intravenous Immune Globulin) therapy by insurance companies more

concerned with bottom-line profits than providing doctor recommended

therapies. Sadly, this creates a situation in which families are

forced to choose between their children’s health and financial ruin.

 

According to the National Institutes for Mental Health

 

“PANDAS, is an abbreviation for Pediatric Autoimmune Neuropsychiatric

Disorders Associated with Streptococcal Infections. The term is used

to describe a subset of children and adolescents who have Obsessive

Compulsive Disorder (OCD) and/or tic disorders, and in whom symptoms

worsen following strep infections such as "Strep throat" and Scarlet

Fever.”

 

Recent research at NIMH has led to an expansion of the original PANDAS

criteria and the subsequent use of the term PANS:

 

“PANS is a newer term used to describe the larger class of acute-onset

OCD cases. PANS stands for Pediatric Acute-onset Neuropsychiatric

Syndrome and includes all cases of abrupt onset OCD, not just those

associated with streptococcal infections. “

 

If you would like more information regarding these disorders, please

visit the National Institute for Mental Health’s (NIMH) website at

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

Thank you for supporting this important piece of legislation.

 

Sincerely,

Edited January 31, 2013 by pandas mom

[MovingForward]

Hi All,

 

We just wanted to update everyone on the progress of the Massachusetts PANDAS/PANS legislation.

 

For us, this legislation boils down to one thing-Choice. While we recognize that IVIg is not the only treatment option for children with PANDAS/PANS, research demonstrates that it can be a valuable part of a multi-pronged treatment approach. Our motivation in pursuing this legislation stems from our year-long battle with our insurance company to provide our child with the treatment recommendations of our team of doctors. Despite the support of our medical team, our child was repeatedly denied access to this therapeutic option. We are fortunate in that we are surrounded by an amazing, supportive, and creative community that helped us to persevere until we finally obtained coverage. We believe it is unethical and inhumane that insurance companies are able dictate treatment options and overrule the therapeutic recommendations of doctors. Families in crisis shouldn’t be shouldered with the additional burden of fighting for medical treatment, while they are struggling to heal their children. We hope that by pursuing this legislation we can help out other children and families struggling to make sense of this disorder and pay forward the kindnesses that have been shown to us.

 

For those of you that don’t live in Massachusetts, perhaps this legislation will serve as a model or impetus for similar bills in other states. We are currently waiting for the bill to be assigned to a Committee. Once it is assigned, a schedule will be determined, and we will have an opportunity to tell our stories. From what we have been told this will be the time to draw in support from as many circles as possible.

 

Ultimately, we are very happy with the momentum that has built over the last week. In three days, we were able to get 18 legislative co-sponsors for the bill. Representative Scibak reported that he received many supportive communications from outside of his district (including contact from outgoing Senator Kerry’s office). While we have been told that there is no direct correlation between co-sponsor numbers and the final disposition of the bill, it makes sense that the more people on board from the beginning, the better the momentum you carry forward.

 

The list of co-sponsors is a Pan-Massachusetts contingent with representation from Western, Central, Southeastern, North Shore, South Shore, and Boston-area legislators. We have representatives from 9 of Massachusetts’ 14 counties. We currently lack representation in Berkshire, Hampden, and the Cape and Islands (Barnstable, Dukes, and Nantucket Counties). The following is a list of co-sponsors of the bills consisting of 15 House Representatives and 3 Senators (Rosenberg, DiDomenico, and Spilka).

 

An Act relative to insurance coverage for PANDAS/PANS:

 

John W. Scibak 2nd Hampshire

Peter V. Kocot 1st Hampshire

John D. Keenan 7th Essex

Stanley C. Rosenberg Hampshire, Franklin and Worcester

Ellen Story 3rd Hampshire

Josh S. Cutler 6th Plymouth

Garrett J. Bradley 3rd Plymouth

James M. Cantwell 4th Plymouth

Thomas J. Calter 12th Plymouth

Sal N. DiDomenico Middlesex and Suffolk

Carolyn C. Dykema 8th Middlesex

Walter F. Timilty 7th Norfolk

James M. Murphy 4th Norfolk

Rhonda Nyman 5th Plymouth

Karen E. Spilka Second Middlesex and Norfolk

John J. Lawn, Jr. 10th Middlesex

Marjorie C. Decker 25th Middlesex

Steven M. Walsh 11th Essex

 

 

An Act designating PANDAS/PANS Awareness Day

John W. Scibak 2nd Hampshire

Peter V. Kocot 1st Hampshire

John D. Keenan 7th Essex

Stanley C. Rosenberg Hampshire, Franklin and Worcester

Ellen Story 3rd Hampshire

Josh S. Cutler 6th Plymouth

Garrett J. Bradley 3rd Plymouth

James M. Cantwell 4th Plymouth

Thomas J. Calter 12th Plymouth

Carolyn C. Dykema 8th Middlesex

Walter F. Timilty 7th Norfolk

James M. Murphy 4th Norfolk

Rhonda Nyman 5th Plymouth

Karen E. Spilka Second Middlesex and Norfolk

John J. Lawn, Jr. 10th Middlesex

Marjorie C. Decker 25th Middlesex

Steven M. Walsh 11th Essex

 

The following is a link to names, email addresses, and phone numbers for members of the Massachusetts House of Representatives and Senate. Please feel free to call the above legislators to thank them for their support. In the future it will be helpful to call the other representatives that have not yet signed onto the bill to obtain their support.

 

 

http://www.malegislature.gov/people/house

http://www.malegislature.gov/People/Senate

 

 

Thanks for listening.

 

Heather and Jacob

[pandas mom]

Bumping up for my husband "moving forward". Thank you to everyone who helped and sent good energy to MA:)