It is a Christmas miracle! The first IACC meeting in 15 months!
By Katie Wright
I almost feel sorry for Dr. Bruce Cuthbert, almost…Clearly Dr. Cuthbert has no idea what he was taking on with IACC. Cuthbert lacks the urgency our families feel and spent an inordinate amount of time on administrative details. He already has Dr. Daniel’s extroadinary team organizing these meetings. No need to re-invent the wheel. Instead of giving each member 5 minutes to talk about themselves, autism families would have preferred to hear about each IACC member’s constituency and their top research priorities plus ideas about closing gaps. Be practical!
1) There has been no IACC meeting for 15 months.
2) That is inexcusable, period, end of story, full stop.
3) Dr. Insel chose to ignore his IACC duties for over a year.
4) Nominations for IACC committee members were submitted in a timely fashion (at least by me and almost everyone I know) over 1 year ago! Cuthbert should have apologized, sincerely and repeatedly for the NIH’s failure to hold an IACC meeting for over a year.
5) Instead of taking responsibility Cuthbert said that IACC has not met in 15 months “because these things take time.” No you and Dr. Insel wasted time Dr. Cuthbert. You both clearly wasted a great deal of time.
Then we heard from Dr. Francis Collins. Cuthbert profusely thanked Collins for “attending.” Please, don’t do us any favors Dr. Collins. Collins “attends” one IACC meeting a year by arriving just in time to give a 5 minute speech and then leaving immediately afterwards. That isn’t “attending” it is delivering a short lecture and allowing no Q & A.
Collins has zero understanding of the autism community and was not interested enough to stay an hour to hear from ASD families. Instead of addressing issues families care deeply about, such as the catastrophic rise of ASD, vastly under researched environmental triggers or the failure for the NIH to make any treatment progress over 25 yrs, Collins gave a lecture on the BRAIN initiative. The BRAIN project is basically a study in tool making for brain science. It is not researching any treatments or addressing prevention in any way. This project on tool making will have zero impact on my child and yours, it will not uncover 1 causation factor, nor will it prevent or cure one case of autism.
I am SO Brain Initatived Out! The hype is insane. Total academic self-stimulation. If Collins really understood autism and cared about our families he would know that it is the Microbiome Project that IS actually relevant to our families and offers tremendous here and now value. The Microbiome Project offers almost infinite here and now opportunities to both prevent severe autism and help those suffering with GI problems NOW.
After Collins we heard from all IACC members. I believe the limit of IACC service for an individual is 8 yrs? Someone correct me if I am wrong. Alison Singer of the small Autism Science Foundation has just been re-appointed for her 9th yr of service. The time limit is there for a reason- to give other orgs a chance to sit in those public seats. Additionally ASF has a tiny ASD family base. I am unaware of any services ASF offers families. ASF is primarily a research org funding genetic and early ID science. Yet, those are the two most overfunded areas in the entire NIH ASD research portfolio. All the more reason the NIH should be diversifying the IACC public membership by including organizations that represent gap areas of autism research.
The National Autism Association has about 12,000 members. The NAA offers a myriad of services, personal family support, direct assistance with wandering prevention and a huge 5-day medical and educational conference for ASD families. Wendy Fournier, the NAA president pioneered anti-wandering work and crated the first coalitions. Fournier created the first anti-wandering program, The Big Red Safety Box. It is absurd that, despite being nominated 10 yrs in a row, Wendy has not been allotted an IACC seat.
SafeMinds is an org compromised of 5,000 ASD families. SafeMinds fills a gigantic gap in the ASD science landscape by being the only autism organization SOLELY devoted to enviro research. TACA has over 10,000 members and provides numerous advocacy and mentoring services to families as well as an incredible biomedical and educational (IEPs, insurance workshops…) conferences. THESE orgs deserve seats at the IACC table.
Dr. Rob Ring….The autism community’s disappointment with this man never ceases. Ring wanted that seat, sought that seat, purportedly to represent AS families, NOT the community of geneticists. Can someone remind him of this? Ring asked no questions and basically said nothing other than a boilerplate 2-minute science speech. Dr. Ring you are there to ACTIVELY participate and advocate on behalf of families, not just to take up space.
Not long ago Dr Ring twittered: “anecdotes do not equal data,” a not so subtle swipe towards all those pesky ASD parents who tried (and failed) to share their stories about their kid’s autism with him. One imagines Ring in a “Master Thespian” like setting, on a throne of some sort, wearing a smoking jacket with a pipe in the hand which he uses to angrily gesticulate that ASD family anecdotes are worthless and only scientists can understand autism! Anecdotes are worthless!!
Ring, do us all a favor and take a page out of John Elder Robsion’s book. Robison was magnificent! Please watch him on the IACC video! Elder made an impassioned speech about the need for IACC to better incorporate consumer research priorities into their Strategic Plan. John spoke about how he was so personally affected by reading all the public comments. Elder gave many wonderful examples of low hanging research fruit that IACC should immediately incorporate into the Strategic Plan: treatment of GI disease, seizures, sensory disorders…etc. John spoke about the complete loss of credibility IACC has with ASD community if IACC continues to ignore the public’s demands. I am so grateful to John and look forward to hearing from him at IACC meetings.
Carolyn Gammiccha and Cassandra Oldham and Lisa Weiderlight are three autism Moms who submitted testimony during the public comment period. They were phenomenal. I watched them in awe, applauding for them in front of my computer screen.
Cassandra (2:42) spoke so bravely and eloquently about severe autism and how people with severe autism and their families have been ignored and ill served by the NIH. She was brilliantly courageous and heart breakingly honest. Thank you Cassandra for speaking for my family as well.
Carolyn addressed the failure of the NIH to give seats to the biggest ASD consumer orgs other than Autism Speaks, specifically: Talk About Curing Autism and the National Autism Assoc. She asked why so many seats were allotted to ASF board members (3). Carolyn argued that the ASF board member IACC reps are geneticists and psychologists who are already an over represented group. Meanwhile IACC does not reflect the reality. In the vast majority of ASD cases autism is not a genetic disorder but an idiopathic complex biomedical disease affecting the CNS, the immune system and the gut. IACC needs fewer geneticists and more experts in medical autism and environmental science.
Lisa Weiderlight, an autism Mom and president of SafeMinds, presented IACC with a step-by-step guide towards making IACC more inclusive, productive and relevant. Dr. Cuthbert, stop with the administrative discussions. Instead print out Lisa’s public comments, distribute her directives to IACC members, divvy up the bullet point assignments and get going! If IACC leadership followed Lisa’s plan something truly meaningful for our families would actually be achieved.
I cannot bear it, if instead, IACC spends yet another year blowing $50 million on early ID and early behavioral intervention research. We are not going to early diagnose our way out of this nightmare. Even with an excellent early intervention only 17% of ASD lose their diagnosis. We have been putting all our eggs into this overhyped basket for too long. Early behavioral interventions are highly effective for kids already HF to begin with. There are 11,000 studies on learning the signs and early intervention. That is enough.
.IACC needs to move on and invest in comprehensive environmental prevention science and biomedical autism research and treatment trials- not just behavioral or eye gazing. Shamefully, Dr. Insel and the NIH are stuck in the past, continually rejecting all IACC nominations for GI specialists, immunologists researchers/ clinicians and environmental science nominees in favor of same old geneticists and psychologists.
Why on earth does James Bell have a seat? Yes he was involved with an autism org many yrs ago but now he only represents his own consulting agency? Bell contributed so little last year and has no constituency. The NAA or TACA is much more deserving of that seat.
Why did David Mandell accept a seat if he was not prepared to attend the one and ONLY IACC meeting of 2015?
Finally there are too many government workers in public seats. I worry that they will be exceptionally undemanding and compliant public members. Maybe I am wrong, time will tell. Our community is suffering because the NIH has made so many ill-conceived and deadend research investments. There is almost no accountability and a tremendous lack of urgency regarding autism at the NIH. It took 15 months to hold a meeting! IACC should be having at least 4 meetings a year. As a result the autism community needs active public participants who really know the community, the science and the gaps in the research.
Part 2 of this post will address the other incredible public speakers that represented our families so beautifully and provided the IACC panel with a valuable education.
Katie Wright is Contributing Editor to Age of Autism.
YES: Katie I too thank you for your for your views and for going. Bless your heart for keeping at it.
Posted by: Benedetta | December 30, 2015 at 11:27 AM
Maurine Meleck, I don't know if it will be of any help to your grandson, or if you've tried it already, but the one thing which keeps my digestion working is daily live yoghurt, in dairy or non-dairy form. I agree with you about non-violent civil disobedience, and I'm doing my bit in Scotland!
Posted by: Grace Green | December 30, 2015 at 10:30 AM
Is Hillary Clinton planning on addressing autism? if so, will that involve anything that will really help our kids? This committee sounds so sad.
Posted by: AutismGoAway | December 30, 2015 at 08:52 AM
Sun-Rose, Do tell how we can do that with our son. he is very affected.
Posted by: AutismGoAway | December 30, 2015 at 08:46 AM
@Maureen and a reader, yes at this point I think that's fair. It is beyond disgusting that Congress is not acting on the whistleblower info. Protesting at CDC didn't really matter but protesting In DC might. Big rally. Many are obviously disgusted with this President and his appointments. Public sentiment is sick of corruption and games, that much is very obvious and the time is right.
Posted by: reader | December 29, 2015 at 11:24 PM
I always appreciate your perspective on the IACC meetings, Katie. Thank you for your continued efforts to represent families in the bureaucratic mess.
A note about TACA-I'm proud to be one of hundreds of volunteers that serve over 48,000 families. TACA's underpaid and hardworking staff guide passionate volunteers to help families. TACA and other orgs like NAA and SafeMinds know what's really happening in our community and representation is long overdue.
Here's how TACA keeps in touch:
Our parent support team & volunteers responded to almost 30,000 calls (in English and Spanish) for empowerment and support via phone, email and live chat. (Note: we are still collecting data and will finalize this number in January.)
Chapters: Our volunteer chapter leaders and key volunteers brought TACA’s mission to their community. TACA held an average of 60 meetings & coffee talks per monthacross the U.S.
Over 5,000 attended free family events across the United States hosted by Chapters.
We distributed almost 2,000 Autism Journey Guides–free to families.
We educated over 1,100 families through free live webinars.
TACA receives almost 90,000 unique visitors to our website each month.
TACA provided over 200 medical, swimming, iPads, social skills, conference and other community based grants.
This year, TACA Mentors made almost 380 connections by supporting families needing assistance on their autism journey.
Over 20 guest writers contributed to the TACAnow blog site.
Over 4,000 Facebook, Twitter and Pinterest posts including TACA inspirational family stories, autism news, family-friendly and allergen-free recipes, tips, and TACA articles posted daily.
(From the latest http://tacanowblog.com)
If your family hasn't found TACA yet, join for free at www.tacanow.org .
Posted by: Holly Riley | December 29, 2015 at 09:01 PM
This article documents the clear failure of the Obama administration to improve conditions for those with autism and their families. Terrible appointments to key agencies and advisory groups have resulted in terrible government decisions and a tremendous waste of money ($1.6 billion and counting)in discerning either the causes or treatments of this horrible disease. Many of these officials are corrupt, yet thus far they have not been prosecuted by our lame Dept. of Justice. Nor has Congress held hearings to shed some light on their shenanigans.
Posted by: Barry Stern | December 29, 2015 at 08:27 PM
Ronald;
My guess is that Kawasakis - has different forms- some get really sick and run high fevers - typical, but there is also atypical.
It seems to me that all this autism and Alzheimer is vascular related.
And when you said:
"This has led some to question whether the approach taken to drug development for AD is an optimal one."
I just thought IgG IVs cost thousands of dollars from collecting thousands of blood donors and this drug with as you said lots of side effects ---
And I just thought no truer words -- were spoken!
Posted by: Benedetta | December 29, 2015 at 06:37 PM
What if those with autism getting better didn't have anything to do with drugs? What if the family just went to another - unaffected -- part of the brain and taught it normal things that vaccines and whatever else triggered it -- interfered with and helped all that normal development to happen now.
What if it didn't cost money (or not much)? What if more drugs are barking up the wrong tree? Then parents wouldn't have to get upset at the lack of interest and intelligence of the so-called "pros", also known as doctors.
What if there were another, better, un-doctor way?
Posted by: Sun~Rose | December 29, 2015 at 06:12 PM
Insel's and Ring's intent was never been to serve autism families or to find effective treatments the parents are hoping for. They are both on the eugenics bandwagon. Insel's job at IACC was to stall. His exit nearly coincided with the announcement of the MSSNG Project. Once the opportunity came up at Google Science to work on the MSSNG he was gone. He was never sincere while at IACC. These men are eugenicists. They are forwarding the agenda of wealthy elite. they're more likely they are strategically placed to further a common goal of genetic cleansing and improving the fitness of the overall population. Our kids are the lab rats in huge global experiment. It's never really been about helping our kids- they were after their DNA all along.
Posted by: Autism mom | December 29, 2015 at 05:26 PM
Katie, great work as always. I think this article needs to be mailed to every single person on that committee to make sure that they see it and know they are being watched. To the reader who mentioned civil disobedience, I think that may the only thing that will work at this point. Someone needs to make a lot of noise, perhaps.
Posted by: a reader | December 29, 2015 at 01:28 PM
Thank you so much for reporting on this, Katie!
Posted by: Twyla | December 29, 2015 at 01:09 PM
Benadetta,
I'm not clear on your message. You mention etanercept as a possible treatment. The first link below is to the description of etanercept side effects from the FDA. The remaining links are to Pubmed papers describing problems resulting from etanercept use. There were many tens of papers; I am displaying only the first few. Again, a drug is being tested/prescribed without any mention of removing all contributing factors. Why should we be surprised at the voluminous KNOWN side effects shown?
http://www.fda.gov/downloads/Drugs/DrugSafety/ucm088590.pdf
Nihon Naika Gakkai Zasshi. 2015 Apr 10;104(4):769-74.
[Case Report; Long-term treatment with etanercept induced systemic sarcoidosis in a patient with rheumatoid arthritis].
Isr Med Assoc J. 2015 Feb;17(2):130-2.
Etanercept-Induced Pneumonitis: Severe Complication of Tumor Necrosis Factor-Alpha Blocker Treatment.
Watad A, Perelman M, Mansour R, Shoenfeld Y, Amital H.
Case Rep Dermatol Med. 2015;2015:168063. doi: 10.1155/2015/168063. Epub 2015 Feb 18.
Etanercept-induced pityriasis lichenoides chronica in a patient with rheumatoid arthritis.
Echeverri AF1, Vidal A2, Cañas CA1, Agualimpia A1, Tobón GJ1, Bonilla-Abadía F1.
Abstract
We present a 74-year-old female patient who developed a pityriasis lichenoides chronica (PLC) during etanercept therapy. This association is not described in the literature and might be considered in the spectrum of cutaneous adverse reactions of etanercept.
Cutis. 2014 Jul;94(1):31-2.
Etanercept-induced cystic acne.
Kashat M, Caretti K, Kado J1.
Abstract
Tumor necrosis factor α antagonists are potent biologics used to treat a variety of autoimmune disorders such as rheumatoid arthritis, ankylosing spondylitis, Crohn disease, psoriasis, and psoriatic arthritis. These medications are known to have many side effects (eg, infusion reactions, cytopenia, risk for infection, heart failure); however, only a few cases of acne vulgaris have been associated with the use of these biologics, particularly infliximab and adalimumab. We report a rare case of etanercept-induced cystic acne.
Clin Exp Dermatol. 2003 Nov;28(6):604-7.
Etanercept-induced systemic lupus erythematosus.
Swale VJ1, Perrett CM, Denton CP, Black CM, Rustin MH.
Abstract
Tumour necrosis factor (TNF) is a pro-inflammatory cytokine with a role in the pathogenesis of a number of conditions including rheumatoid arthritis, psoriasis, psoriatic arthritis, ankylosing spondylitis and Crohn's disease. Etanercept (Enbrel; Immunex Corp., Seattle, WA, USA) is a recombinant soluble fusion protein of TNF-alpha type II receptor and IgG which acts by blocking the action of TNF-alpha. It is licensed for use in rheumatoid arthritis and juvenile chronic arthritis. A number of studies report the development of antinuclear and anti-double-stranded DNA antibodies in patients treated with TNF antagonists for rheumatoid arthritis. There are few reports of the development of clinical features of discoid, subacute or systemic lupus erythematosus. We present one of the first reported cases of etenercept-induced systemic lupus erythematosus and review the literature of lupus and TNF antagonists.
Posted by: Ronald Kostoff | December 29, 2015 at 11:34 AM
As I watch the grandson I am raising regress again into his non-eating phase, I grow more sick and tired of this purposeful and knowing rejection of all of us with kids on the spectrum. Those that run the agency and all the agencies that block our input know all of it. This is a conspiracy at the highest levels. I may be alone, but I say it's time for civil disobedience before it's too late. I say tens of thousands of us head to DC and rock their damn walls down. 16 years is too long to be in this fight!!
Posted by: Maurine Meleck | December 29, 2015 at 11:30 AM
Are IACC avoiding stating the obvious - that Insel resigned because of the fact that he presided over the William Thompson era? And could that mean that things might change a little now, or am I being over optimistic? IACC, the eyes of the whole world are on you.
Posted by: Grace Green | December 29, 2015 at 10:50 AM
Black box warning for that etanercept bad, life threatening infections.
Posted by: Benedetta | December 29, 2015 at 10:04 AM
Ronald -- Detailed Description:
Kawasaki Disease (KD) is a potentially life threatening acute vasculitis in children with a predilection for involvement of the coronary arteries. Aspirin and Intravenous gamma globulin (IVIG) are principally used for the treatment of the symptoms of Kawasaki Disease. Aspirin reduces inflammation and platelet formation, but has no effect in attenuating the development of coronary abnormalities. Although IVIG reduces inflammation and the prevalence of coronary artery abnormalities, it has a relatively high failure rate of 23-30%, warranting new treatment methods for Kawasaki Disease. We propose a placebo controlled double blinded randomized study to determine if etanercept 0.8 mg/kg subcutaneously (max 25 mg) given three times at weekly intervals starting at initial diagnosis is safe in this patient population and if it is a successful adjunct therapy with IVIG in reducing the incidence of persistent or recurrent fever. i read "Brain on Fire", IgGs, separating antibodies from the blood, and steroid use did work.
Posted by: Benedetta | December 29, 2015 at 10:00 AM
--- And thus --- the game of stalling still continues.
Posted by: Benedetta | December 29, 2015 at 09:50 AM
Katie, great comments as always! I have submitted several comments for the IACC meeting in January, with a request that they be discussed. First I thanked John Elder Robison for reading and discussing all the comments submitted. He did misinterpret my "non-acceptance" of autism. What I cannot accept is the idea that prevention is not needed.
John Elder Robison's education is not in medicine. Thus he cannot be expected to take an interest in brain injuries that underly impaired language development, repetitive movements, and diminished level of consciousness. But IACC members who are medical doctors should recognize that autism is a neurological disorder.
Members of the IACC with medical degrees should be required to discuss the uneducated views of self-advocates appointed to the committee. In NeuroTribes, Steve Silberman did not adequately discuss the disorders of language that so seriously limit development of people afflicted by autism. He did not discuss the stilted speech of people with Asperger syndrome.
Parental accounts may be anecdotal, but Kanner did not understand the echolalic (metaphorical) language used by autistic children. These strange out-of-context expressions had to be explained to him by parents!!!
Posted by: Patience (Eileen Nicole) Simon | December 29, 2015 at 09:12 AM
Katie,
The BRAIN initiative is defined as follows:
"In 2014, President Obama launched the BRAIN Initiative as a large-scale effort to equip researchers with fundamental insights necessary for treating a wide variety of brain disorders like Alzheimer’s, schizophrenia, autism, epilepsy, and traumatic brain injury. These new tools and this deeper understanding will ultimately catalyze new treatments and cures for devastating brain disorders and diseases that are estimated by the World Health Organization to affect more than one billion people worldwide."
"The National Institutes of Health announced its second wave of grants to support the goals of the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, bringing the NIH investment to $85 million in fiscal year 2015."
"Sixty-seven new awards, totaling more than $38 million, will go to 131 investigators working at 125 institutions in the United States and eight other countries. These awards expand NIH’s efforts to develop new tools and technologies to understand neural circuit function and capture a dynamic view of the brain in action. Projects include proposals to develop soft self-driving electrodes, ultrasound methods for measuring brain activity and the use of deep brain stimulation to treat traumatic brain injuries."
In my book, and in some of my comments on AoA, I described the research of Dr. Dale Bredesen, a clinician/researcher who claims to have reversed AD/cognitive impairment in nine out of ten cases. That sounds pretty impressive to me, especially compared to the fates I have seen of family and acquaintances who have developed this disease and have followed mainstream medicine protocols. One would think the research/clinical community, and especially the NIH, would be funding and executing myriad initiatives to replicate and improve Dr. Bredesen's results. If any of the readers are aware of such further activity, please post.
Dr. Bredesen's paper was published in mid-2014, and presently has nine citations. I examined papers in Medline with AD in the title published in 2014-2015, and focused on the numbers of citations they received. That is ostensibly a measure of interest/activity/quality. The top two cited papers (with their citations in parenthesis after the title, followed by their conclusions in quotes) were:
Two phase 3 trials of bapineuzumab in mild-to-moderate Alzheimer's disease. (209)
" Bapineuzumab did not improve clinical outcomes in patients with Alzheimer's disease, despite treatment differences in biomarkers observed in APOE ε4 carriers."
Phase 3 trials of solanezumab for mild-to-moderate Alzheimer's disease. (172)
" Solanezumab, a humanized monoclonal antibody that binds amyloid, failed to improve cognition or functional ability. "
So, Dr. Bredesen's trial was successful and received nine citations, while the other two trials were unsuccessful and received more than an order of magnitude more citations. One can only imagine the number of citations these two trials would have received had they been successful!
As I reported in my book, it is the high-tech treatments/ diagnostics/ surgeries/ radiations that garner the citations, the interest, and ESPECIALLY the funding. Sponsoring high-powered people and institutions to search for these elusive high-tech cures for AD and the other chronic diseases guarantees a lifetime of increasing research budgets for the Federal sponsoring agencies, and full employment for the performers. For the AD existing and prospective patients, not so much.
I'll end with a quote from Dr. Bredesen, which is aimed for AD specifically, but which could be expanded to EVERY chronic disease:
"In the case of Alzheimer’s disease, there is not a single therapeutic that exerts anything beyond a marginal, unsustained symptomatic effect, with little or no effect on disease progression. Furthermore, in the past decade alone, hundreds of clinical trials have been conducted for AD, at an aggregate cost of billions of dollars, without success. This has led some to question whether the approach taken to drug development for AD is an optimal one."
Think about this statement in the context of the highly cited papers above.
Posted by: Ronald Kostoff | December 29, 2015 at 07:39 AM
Just to clarify this is not perhaps quite a Christmas miracle but a belated and useful report of the meeting which took place in November.
http://www.ageofautism.com/2015/11/the-international-autism-coordinating-committee-met-yesterday-below-are-a-few-of-the-public-comments-and-links-to-much-more.html
It should also be noted that Francis Collins told Congress when he was still head of the Genome Project nearly ten years ago:
“Genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons."
http://www.genome.gov/18016846
Of course, he didn't mention vaccines, but he's been faffing around wasting the public's time and allowing ever more harm to occur ever since.
Posted by: John Stone | December 29, 2015 at 05:53 AM