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Mr. Congressman, We Need to Talk

CongressBy Cathy Jameson

I wrote and sent this to my Congressman last week.  I wanted to make sure he knew about the Congressional Briefing on the National Vaccine Injury Compensation Program and about the upcoming Hearing.  I haven’t heard back from him yet, but when I do, I hope it is a positive response. 

Hello, Congressman,

I have a 10-year old son who was vaccine injured.  Ronan's injury happened as we followed the recommended childhood vaccine schedule.  We discovered that not all vaccines provide benefits and that for my child, vaccines played a negative role in his development.  In this discovery, we also learned that our government set up a program to assist those who are injured by vaccinations.  Since we saw that Ronan’s injury correlated with his vaccines, we filed a claim with Vaccine “Court” in the National Vaccine Injury Compensation Program. Since that program was set up in the late 1980s under the Department of Human Health and Services, the US government has awarded over $3 billion to vaccine injured individuals or to the families of those who have died from a vaccination. 

The results of Ronan's injury were very clear to us.  They continue to plague him as well.  Ronan is non-verbal, has seizures, cannot use the bathroom on his own, cannot cross the street on his own, is in jeopardy of wandering, is enrolled in a special education program and requires one-on-one speech, occupational and behavioral therapy.  He has also been diagnosed with autism.

From our initial filing to Ronan’s case being dismissed in Vaccine Court, it took 7 years to get through the system.  Seven years!  Looking at Ronan, knowing his history, connecting the dots on his medical records from when he went from happy and healthy to very sick and severely autistic, it's clear that vaccines did something to him.  One can see the progression of the major regression.


One cannot deny the struggles he deals with every single day.  One can clearly see how medically fragile he is.  On paper, though, the VICP made it incredibly difficult to prove that the vaccine injury occurred.  This program, while intending to be swift and helpful, was designed by the government for the government's gain.  It failed a child, a child who has been left with life-long medical issues and who will likely remain dependent on me and my husband for a very long time. 
I am writing to you, Congressman, because I need your help.  Ronan lost his voice.  He lost his ability to speak after receiving his vaccines.  He cannot tell me when it hurts.  He cannot tell me what he needs.  He cannot tell me what he wants or doesn’t want.  He cannot speak up for himself.  But you can.  You can use your voice.  You can do that for Ronan, for our family and for the other families in your district who need you to speak up. 

Here is a description of what is currently in place and what type of action needs to be done to remedy the problems.  From advocates for the vaccine injured, because they say it better than I could: 

"Since the 1980s, thousands of children have suffered irreparable injuries or death from federally recommended vaccines. Vaccines are “unavoidably unsafe” and yet the federal government recommends that children receive 70 doses before age 18. Childhood rates of chronic disease, including autism, ADHD, asthma and severe allergies, are exploding. These disorders cost the nation trillions of dollars. Medical and scientific experts have presented credible evidence linking these disorders and diseases with vaccine injury in the VICP.

The VICP exhibits manifold failings: the normal rules of civil procedure and evidence don’t apply; Special Masters routinely slash lawyers’ and experts’ fees; the Special Masters, appointed to four-year terms, lack judicial independence; limited science is available to petitioners, although HHS maintains vast databases; there’s no jury of citizen peers; and the government has no burden to prove alternate causation. And these are just some of the problems.

Come learn about how this system has become a politicized, arbitrary and capricious program that victimizes those who have suffered from federally recommended vaccines. In a program that Congress intended to be swift, generous and non-adversarial, cases routinely last more than a decade; over 80% of petitions go uncompensated; and Health and Human Services and the Department of Justice flagrantly antagonize families who have suffered catastrophic injuries." (posted on www.ageofautism.com)

Sadly, with the dismissal of Ronan’s vaccine injury case, none of Ronan's developmental delays, medical needs or overall struggles went away.  Neither did the existing problems within the VICP.  Tomorrow, Nov. 7th, at noon, in preparation for the upcoming Congressional Hearing about the injustices of the Vaccine Injury Compensation Program, a Congressional Staff Briefing will be held.  It will be held in the Rayburn House Office Building, Room 2203.  I, unfortunately, will not be able to attend the briefing.  I won’t be there to hear what is being proposed to address the problems of the VICP.  I won’t be there as I have to stay close to home to care for Ronan.  I am asking that you, please, go to the briefing for me.  Go for Ronan.  If you cannot go, please, send a health staffer to go in your place.  Get the information from those who are informed.  Listen to those who have worked tirelessly on behalf of children like mine.  Believe in, and act with, those who have promised to never ever give up on making the changes that are needed to fix the program that is so very broken.

No one is exempt from vaccine injury.  My child is proof.  It may be too late for Ronan to receive the justice he deserves, but together, we can work to ensure that the vaccine injured who come after Ronan will get the help they need.  That matters.  Ronan’s voice matters.  Please, be part of the effort to give the voiceless a chance to be heard. 

Respectfully,

Cathy Jameson
--
Cathy Jameson is a Contributing Editor for Age of Autism

Comments

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Cia Parker,

I share your pessimism that appealing to our elected officials will likely not make much difference. I consider the vaccine/autism war as one that will be won from the bottom-up not the top-down. Think about it -- who are we more likely to sway? A congressman who has stake his reputation and career on not upsetting the status quo, or a parent having to decide whether she will risk it with vaccines and have her kid ends up as one of the 1 in 50? Indeed we should pursue all options, and perhaps we may be surprised here and there. Still, let's not despair and lose sight of our key strategy of spreading the message to the masses that vaccines cause autism. Every parent that we get to rethink vaccines is one chip away at the 'great-wall' of denialism and outright lies. And, I sincerely believe it is bound to crumble.

Greg

I have said and will say again, I think the only way we stand a chance to win this / change this is to take this information to the general public through Radio & TV ads.

That would be something I would be more then willing to give money for.

One of many letters I have written, this one to the Governor of Florida in 2003 -- I got back a lovely letter baout how it is important to provide care for children with disabilities (of course not discussing where the care would come from or how it would be funded): 1/12/03

The Honorable Jeb Bush



Please read my attached letter and realize that 1 in every 250 (or more) children have been afflicted with autism (this figure does not include millions of others with asthma, AD/HD, ADD, and other syndromes).
A day in our life is difficult emotionally, spiritually, physically, and financially. For families in Florida, where the working parent brings in a reasonable wage, there is no governmental assistance to help with the exorbitant cost of feeding, supplementing, medicating, providing the many necessary specialists, expensive lab tests, extensive high-tech work-ups, massive therapy session-load, and ridiculously high priced everything-free (autistic children are often allergic to virtually everything that you can find in a traditional grocery store) foods. The current estimate is that it costs at least 2 million dollars to care for a person with autism, for their lifetime.

Right now, on the average, our household is out-of-pocket between $1,100.00 - $1,400.00 each month, to cover autism related expenses. Yes, my husband earns a good wage, but after putting a small amount away for retirement, paying taxes, the mortgage, car payment, insurances (health, life, auto, homeowner), power bill, telephone bill, water/sewer bill, grocery bill, car repairs, autism-related expenses, etc., we end up more and more in debt. Developmental Services has thousands of children (ours included) who need services NOW wait-listed for an indefinite period of time (most likely YEARS), awaiting more funding. These children need INTENSIVE therapies immediately (birth through 5) to ensure their best success at being productive citizens, in their lifetime; alternatively, they will be a burden on society, requiring group living environments, many therapeutic and medical services, and lifetime care.

Strong, cohesive families (who have learned to work together to challenge the giant obstacle that is autism) are being faced with divorce with property divestiture as their only alternative, in order to obtain appropriate treatment for their children; commercial insurance companies provide only enough coverage to meet about 10% - 20% of these children's therapeutic needs. State and Federally funded healthcare programs provide complete coverage to lower income families.

Maybe it is coincidental that our children experienced reactions to their vaccines, which turned into a downward spiral, ending with severe autism; maybe it is not. Shouldn't it be up to our justice system to determine liability?! If blame is not correctly assigned, and the responsible parties do not step up to the plate - how will our society possibly bear this massive burden? Again, the current estimate is that it costs at least 2 million dollars to care for a person with autism, for their lifetime. Even if the government/society funds all the necessary early intervention and therapeutic programs, appropriately, there is still a cost of hundreds of thousands of dollars per child - where will it come from?

Please ensure the provisions, which protect the drug companies from liability, remain removed from the Homeland Security Act and ALL legislation; certainly, if the cause of damage to so many children lies elsewhere (as they have implied), they should not care about this inappropriate shield being removed.
Help to prepare our children to meet the future with capability, not disability.

Thank you,

Elizabeth Parker

Would you like to collect 1.74 million dollars over the next ten years? Then, presto, become a Congressperson. Members of either house get $174,000 per annum as base pay.
It's easy to become a candidate.
The persons who are currently holding the Hill job cannot be appealed to by logic or sentiment. They are held in thrall. Or so it appears.

In the case of my child, we were expected to prove which of the nine vaccines given to him on that one well visit was the cause of his injury. Like proving which shot from the firing squad delivered the fatal injury. Is this the reason they give so many shots on one visit?

Beautiful, eloquent letter!!

Will your congressman actually read it? Will he be affected by it? We don't know, but he might! Or maybe some staffer will read it who will someday be in a position of power, or who will begin advocating behind the scenes for addressing these issues. Regardless of whether we receive an immediate meaningful response, if everyone keeps telling their stories there is value in that. The visible advocates who are devoting their lives to this need grassroots support from thousands of parents, most of whom are voters, who can tell their stories to congresspeople, the media, doctors, govt officials, and more. Especially right now to the Congressional Oversight Committee via the Canary Party's survey here:
https://www.surveymonkey.com/s/VICPSurvey
and to your own senators and congress(wo)man.

Great letter, Cat!

I have received recent responses back after having sent a letter via Autism Action Network:

October 15, 2013

Ms. Teresa Conrick

xxxxxxxxxx

Dear Ms. Conrick:


Thank you for contacting me regarding the presence of thimerosal, a mercury-containing compound, in vaccines. I appreciate hearing from you.

Studies conducted by the National Institute of Allergy and Infectious Diseases and the Centers for Disease Control have failed to show a connection between thimerosal and vaccine injury. In 1999, as a precautionary measure and as a result of recommendations from the Public Health Service and the American Academy of Pediatrics, thimerosal was removed from all vaccines, except for influenza vaccines.

Vaccines are an integral component of public health. Vaccine-preventable diseases such as polio and diphtheria are at record lows. It is vital that parents feel confident that having their children immunized will prove beneficial to their children, their communities, and to the public health of our nation.

All vaccines should be safe and effective. Adverse effects – however rare – should be taken seriously. I support efforts to improve the quality, safety and effectiveness of public health efforts. I will keep your views in mind as this issue is addressed in Congress.

Thank you again for contacting me. Please feel free to keep in touch.

Sincerely,

Richard J. Durbin

United States Senator

RJD/sl


September 18, 2013

Ms. Teresa Conrick

xxxxxxxxxxxxxxxx

Dear Ms. Conrick:

Thank you for contacting me regarding Dr. Brian Hooker’s Freedom of Information Act (FIOA) requests. I appreciate hearing from you.

As a result of letters I received like yours, my office inquired about Dr. Hooker’s outstanding FIOA requests with the Centers for Disease Control and Prevention (CDC). The CDC has provided a large number of documents in response to Dr. Hooker’s 77 FOIA requests since 2004. The CDC has responded to 56 of his requests. The agency is currently processing the additional FIOA requests, however, it is operating under a significant backlog of numerous and complex requests so compliance is slow.

The CDC serves as an invaluable resource for improving our nation’s public health by developing disease prevention and control measures and by supporting health promotion and education activities. The CDC plays an important role in the federal response to autism and is an active member of the Interagency Autism Coordinating Committee (IACC)—a federal advisory committee that coordinates all efforts within HHS that concern autism. Furthermore, the CDC places a high priority on vaccine safety, as well as on the integrity and credibility of vaccine safety surveillance and research. Information about the vaccine safety activities at CDC can be found at – www.cdc.gov/vaccinesafety.

Thank you again for contacting me. Please feel free to stay in touch.


Sincerely,


Richard J. Durbin

United States Senator

RJD/sl

I get nothing but form replies either. My friends tell me I have to support Claire McCaskill anyway, for example, because she's so busy, cannot possibly be expected to read her constituents' concerns or do anything about them. They say it's totally to be expected that she not respond to phone calls, emails, or letters delivered by mail, that her staffers read them and throw them away without informing her of them. Not her fault. Not anybody's fault. I canvassed for her last year. So what did I get in return? I got an email the other day about how she's working for me, supporting a bill to protect women's rights in the workplace. I wrote back saying that, compared to the vaccine injury issue, it was simply not an important issue, and I would like to know her thoughts on vaccine injury, which has so severely damaged myself and my daughter (and parents, may they rest in peace). I have gotten no reply. I called her office on Tuesday to ask her to send a staffer to the meeting in the Gilmore building, even though she's a senator rather than a representative, it would be good for her to become informed on the issue. I got no reply. Our elected representatives are extremely unlikely to do anything to disturb the status quo, which is just to parrot all the pharma memes about vaccines being the greatest discovery in all of history, saving millions from death or disability from serious diseases, without giving a second thought to the murmurs from the populace of death and diability in our children and in ourselves caused by the vaccines. Why should they? The pharma industry is the most powerful in the world, their lobbyists the most ubiquitous and persuasive, and it's just such a smooth, comfortable, unassailable system to have the medical, pharma, political, and news media all on the same page, getting rich from "protecting" people from every disease they can come up with a vaccine for. And it's worked so well so far just to say there's no connection, correlation does not equal causation (though the whole scientific method is premised on its often doing so), even if the child goes into seizures and loses his language as soon as he gets the shot, he would have done so at that time even if he hadn't gotten the shot, autism numbers have always been the same because it's a genetic condition, not environmental. So all the dee-dashed politicians have to do is nod sagely and say yes, it is a tragedy, and very concerning, but since the best and most highly-paid doctors agree that there is no connection, it must just be our grief that has addled our perceptions. Gotta prevent measles, mumps, pertussis, and chickenpox no matter what the cost. Herds over health.

Petition anyone?

What if someone with a very clear case such as Cathy, started a change.org petition mentioning that X$ of each vaccine is supposed to go into the vaccine injury fund and asking that we petition:

"If the vaccine court continues to … [list the harms] . . we demand that the liability protection be lifted from vaccine manufacturers and that these cases be allowed to be tried, retroactively and going forward, in the normal court system" . Perhaps the fear that they could lose this bizarre, unprecedented liability protection would cause pharma and CDC to conclude it is best to stop this stonewalling and this daily barage of cruel and unrelenting personal media attacks on families who have feel compelled to speak out, families who have suffered due to CDC and pharma negligence, lies, and denial. If they had to pay for the incredible harm they have done--instead of our children and our families and our tax payers and our school systems . . . it would stop. Yesterday.

I can see an addition to this letter:

P.S. Mr. Congressman,

Children like my son and their injury cases may not seem critical at the moment, but Ronan isn't going away. He and hundreds of thousands like him don't exist in the adult world, and they will someday cost the taxpayers more in lifetime care cost than anyone can possibly imagine. This issue may not have the attention of lawmakers at present, but believe me, it will. The American people will be asking EVERYONE--health officials and elected representatives how this epidemic could possibly have happened while all those in charge did nothing about it. This hearing is proof that Congress is being warned. It's time to listen. It's time to act.

Respectfully. . .

(Thank you, Cathy, for your heartfelt words.)


As if you had time to do this, but still here are some suggestions that make it more possible someone will attend. I have done this and I hope everyone out there will as well. It's the only way we will ever make this get addressed.

I suggest that you call your congressperson's office and ask who would be the person to talk to about vaccine issues and upcoming hearings. Get their name and email. Ask to get transferred to that person's voice mail or you may even be able to talk to them live. This makes you more real to them. Then, send a copy of this letter to that person, cc'ing the person you spoke to. Tell them that you will be calling them to ask if they are going to attend, and also after the hearing, to find out what they thought and to see if you can help or help them find others who can. Assume they WANT to help you and that they have no CLUE about these politics. The creepy people who troll sites and put cruel comments down about parents of vaccine-injured children are nothing like real people who are not in medicine, and have no preset bias. I have found people like that to be much more open than you expect. By reaching out to them in person, we "inoculate" them from the propaganda. We get them to question it. At least, I hope so. Also tell them that you write for blogs and that you will be happy to report their impressions of the hearing, and that many consituents who have this same issue are too overwhelmed with caring for their child to chime in right now, but are interested in finding out how Congressman X feels about this. Even if you get someone to go to this just to cover the bases, it's a start. . .

I tend to agree with Benedetta. I'n my old age I cynically expect "the bed bug" letter whenever I contact my govt representative. http://service-ability.com/?p=632

That said, I am also awed by the courage and determination of parent-grandparent warriors who will continue the battle for our kids.

Thank you, Cathy!

I am so sorry Cathy, but if they are anything like my two representives all you will get back in some form letter, without even a hint thet they actually read your letter.

Great letter! Stay in touch with your Representative. Let him no he is being watched on what he does on this issue.

Excellent, excellent letter, Cathy. Please let us know if you receive a response from your Congressman.

".... this system has become a politicized, arbitrary and capricious program that victimizes those who have suffered from federally recommended vaccines. In a program that Congress intended to be swift, generous and non-adversarial, cases routinely last more than a decade; over 80% of petitions go uncompensated; and Health and Human Services and the Department of Justice flagrantly antagonize families who have suffered catastrophic injuries."

Unfortunately, the one thing the "system" does is exactly what it was intended to do ... provide "product liability protection" for the vaccine industry.

As expected .. everything other than "product liability protections" .. such as .. the spirit and intent of Congress that promised .. "swift, generous and non-adversarial" adjudication of claims .. has gone by the wayside .. due mainly to the appointment of "special masters" that routinely issue "political, arbitrary and capricious" decisions .. that .. not surprisingly .. favor those vested interests that appointed them special masters in the first place.

AND THE BAND PLAYS ON

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