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Tuesday, October 15, 2019

We Need More Vaccination


Adriana Belmonte at Yahoo Finance:
Measles, a highly contagious disease, was declared eliminated from the United States in 2000.
However, over the last decade, there have been over 3,000 measles cases across the country, which has brought the disease back into focus. Much of it is because of low immunization rates as a result of vaccine misinformation, according to many medical experts.
“I think vaccines are honestly a victim of their own success,” Dr. Paul Offit, professor of pediatrics at the Hospital of Philadelphia, told Yahoo Finance. “I was a child in the ‘50s and ‘60s. I had measles, I had mumps, I had rubella, I had chicken pox. I know what all those diseases felt like, but my children … [don’t] see these diseases today. And I think for some people they’re thinking, why do I need a polio vaccine? Why do I need a diphtheria vaccine?”
We know that school vaccination is one way to reduce the number of unvaccinated individuals, and therefore protect the country at large. And while the loud voices of antivaccine campaigners can make such laws seem unfavorable, polling data show otherwise. A second bill passed in California this year, SB276, which strengthened medical exemptions after some parents used fraudulent medical exemptions to avoid vaccination and get around the changes implemented via SB277. A Los Angeles Times poll showed that over 80 percent of the population surveyed supported the bill, and that support was bipartisan.
Finally, though the removal of vaccine exemptions is not without controversy, both the American Medical Association and the American Academy of Pediatrics support tightening vaccine exemptions for U.S. schoolchildren as a measure to improve vaccination rates and reduce the circulation of vaccine-preventable diseases in the population.

The near-loss of the country’s measles elimination status should serve as a wake-up call for all of us. America has been a global leader in infectious disease control, but this year we’ve teetered on the verge of a massive blow to our reputation and credibility on the world stage. Meanwhile, 1,250 individuals and counting — primarily children — suffered from measles infection unnecessarily. We need to do better, and removing vaccine exemptions is a key way to protect the health of our most vulnerable.

Monday, October 14, 2019

Antivax: Left, Right, and Cartman


At Forbes, Dani Di Placido writes of the 300th episode of South Park, in which Cartman has refused vaccination.
As Cartman chooses to believe the repeatedly debunked myth concerning a link between vaccines and autism, he asks his mother if getting his shots is really worth the risk of ending up “artistic,” “like Jimmy,” or, “like Token.”
Cartman’s characteristically hateful, ignorant comparison highlights something disturbing about the anti-vax conspiracy theorists - the (imaginary) threat of autism is considered worse than the threat of death.

As Randy continues his obnoxious celebration of ill-gotten wealth, he finds himself ostracized by the townspeople, along with Liane. As the two share their grievances, claiming that they are only doing what’s right for their family, both manage to reduce an issue that affects the entire community into a story about themselves.

But the two have a sudden change of heart and decide to make amends, Liane hilariously taking a vaccine for her squealing son, and Randy finally reconciling with Towlie. ‘Tegrity Farms is now sticking to its values, and so, it seems, is South Park.
Mike Madrid at Medium:
At a time of historic political polarization, the anti-vaccination movement has accomplished something unprecedented: It has united the left and right fringes of the political spectrum.
The anti-vaccine movement is a curious blend of anti-government sentiment on the right and a revolt against all things “big” on the left. This toxic cocktail has spawned a new form of populism built on institutional distrust and conspiracy theories about governments and corporations, as well as a convergence of race and gender politics.
Two clear characteristics define the movement: growing moral isolationism disguised as a strong belief in freedom, along with an overwhelmingly white and female activist base.

Sunday, October 13, 2019

Most Voters Have Disability Connections

In The Politics of Autism, I write:  "Support from the general public will be an important political asset for autistic people. Another will be their sheer numbers, since a larger population of identified autistic adults will mean more autistic voters and activists"

A release from RespectAbility:
A new poll reveals that 85 percent of registered voters say it is very or somewhat important to them that presidential candidates have campaign events and websites that are open and accessible to people with disabilities, just like everyone else. Voters with disabilities themselves are more enthusiastic about participating in the 2020 elections (52 percent), four points higher than the national average. Despite both of these data points, none of the presidential candidates on either side have made their websites and social media fully accessible to voters with disabilities.

Read the Survey Results in Full
This poll occurred at the same time as the Supreme Court denied a petition from Domino’s to hear if the company is required to make its website accessible for people with disabilities. A blind man named Guillermo Robles sued the pizza chain after he was unable to order food on the company’s website and mobile app utilizing screen-reading software. Now, Domino’s will need to maintain accessible sites. Without accessible sites, people with disabilities can be shut out of substantial portions of the economy – or the political process.
“Americans with disabilities are being disenfranchised from the electoral process,” said Jennifer Laszlo Mizrahi, President of RespectAbility, a nonpartisan nonprofit that fights stigmas and advances opportunities so that people with disabilities can fully participate in all aspects of community. “When campaigns are not accessible, people with disabilities are unable to participate fully, and their voices remain unheard.”
The poll also found that a majority (51 percent) of the nation’s electorate either have a disability themselves (15 percent), are related to someone who has a disability (26 percent) or have a close friend with a disability (11 percent). Previous polling suggested that the disability community narrowly supported President Donald Trump over Secretary Hillary Clinton in the 2016 election. This 2019 poll suggests that those with disabilities and their family and friends now are leaning slightly toward backing the Democratic candidate. They also are slightly more likely to lean Democratic than voters without a connection to disability; however, it is important to note that they are not a monolithic block.
In terms of policy, huge majorities of Americans across the political spectrum (73 percent) say they are more likely to support candidates for elected office who ensure that children with disabilities get the education and training they need to succeed, and similar majorities (70 percent) describe themselves as more likely to support candidates who want to expand job and career opportunities for people with disabilities.
With unemployment rates among people with disabilities running more than twice the national average, both voters overall and voters with disability connections believe more needs to be done to help people with disabilities integrate into the work force, starting as a young age.
Candidates for office ignore the disability community at their peril,” said former U.S. Representative and Dallas Mayor Steve Bartlett. Bartlett, who was a primary author of the Americans With Disabilities Act of 1990 and is the board chair of RespectAbility. “People with disabilities are politically active voters, and candidates should take note of the important issues they care about.”
This online national survey was conducted by Democratic polling firm Greenberg Quinlan Rosner on behalf of RespectAbility of 2,000 registered voters from September 18 through September 24, 2019.
Read the Survey Results in FullRead the PDF Summary

Saturday, October 12, 2019

Judge Blocks "Public Charge" Rule


Adam Klasfeld at Courthouse News:
Days after skewering the government’s rationale for denying green cards to immigrants on welfare, a federal judge on Friday blocked the Trump administration’s so-called “public charge” rule in a fiery opinion.
“It is repugnant to the American Dream of the opportunity for prosperity and success through hard work and upward mobility,” U.S. District Judge George Daniels wrote of Trump’s sought-after barriers to U.S. permanent residency. “Immigrants have always come to this country seeking a better live for themselves and their posterity. With or without help, most succeed.”
The scathing 24-page ruling casts the rule change as an unnecessary departure from procedures in place for “over a century.”
...
Citing the Rehabilitation Act, Daniels reminded the government that federal law prohibits discrimination against people with disabilities.
“In fact, it is inconsistent with the reality that many individuals with disabilities live independent and productive lives,” the judge wrote.
Daniels warned that allowing the “public charge” rule to take effect would expose many to suffer “irreparable harm.”

Friday, October 11, 2019

Organ Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

The National Council on Disability reports on discrimination in organ transplantation:
Physicians may also fail to recommend standard therapies or treatments to people with disabilities that they would recommend immediately to patients without disabilities. For example, the NCD research team interviewed Jessica Sunshine Bodey, the mother of Lief O’Neill, an 11-year-old boy in critical need of a heart transplant. While the family was informed that Lief was being denied a transplant because he had autism—a decision they found discriminatory—Lief’s medical team also did not inform them that bridge therapies were available to extend his life while he waited for a transplant. The bridge therapy in question, a left ventricular assist device, or LVAD, is considered a standard “bridge therapy” on the way to receiving a transplanted heart.50 Lief ultimately needed four consecutive LVADs to survive. 
... 
In 2018, Kansas and Ohio both passed similar nondiscrimination laws. Recently, and after years of debate, Pennsylvania did likewise. John Sarbatina, a Pennsylvania state
senator, first introduced “Paul’s Law” in 2014, named after Paul Corby, a man with autism who was denied a heart transplant. The law, like those that passed in other states, seeks to prohibit discrimination on the basis of disability, and prevent individuals with “‘an adequate support system’” from being denied transplants due to an inability to comply with postoperative regimens. Note, however, that Pennsylvania’s bill lacks the detail of many of its predecessors. The bill provides only that discrimination solely on the basis of disability is prohibited, and that unless “following an individualized evaluation” a disability is deemed to be “medically significant,” individuals who have a “necessary support system” should not be rejected for an inability to comply with the postoperative regimen.
.
..
According to Ms. Bodey, Lief only survived because a young doctor argued strenuously in their favor to Lucile Packard Children’s Hospital at Stanford, which finally did accept Lief. During the meeting with doctors at Stanford, Stanford saw Lief typing to communicate and, “at the 11th hour,” accepted him. Lief was quickly flown to Stanford where he received an LVAD. 
Ms. Bodey explained in her interview that upon her arrival at Stanford, she was told by the doctors that the transplant was unprecedented because they had never transplanted a heart into a child with autism as “severely affected” as Lief. Ms. Bodey noted that the very fact that Lief’s transplant was seen as so revolutionary by Stanford meant that few children like Lief had ever been provided with a heart transplant before.
Lief’s road to transplantation was still difficult even after he was accepted at Stanford.
According to Ms. Bodey, his LVAD failed three times. In other words, Lief had to have five separate open-heart surgeries: four to insert LVADs, and one to transplant the heart.
Nonetheless, Ms. Bodey reported Lief handled the surgeries extremely well, enduring a year in the hospital, when prior to his hospitalization, he had been unable sit in a restaurant for more than a few minutes. Lief himself attributed his endurance to the knowledge that his life was at stake.
Mr. Corby, as of yet, has not received a heart transplant. His mother reports that his
condition is stable, but that because of previous rejections following evaluation, he does not wish to undergo any further evaluations unless he is guaranteed placement on the transplant recipient list. As a result, he and his family are not seeking further evaluations by transplant centers at this time.

Thursday, October 10, 2019

Autism and Congenital Heart Disease

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:
Eric Sigmon and colleagues have an article at Pediatrics titled "Congenital Heart Disease and Autism: A Case-Control Study."
OBJECTIVES: There has long been an association between congenital heart disease (CHD) and general neurodevelopmental delays. However, the association between CHD and autism spectrum disorders (AuSDs) is less well understood. Using administrative data, we sought to determine the association between CHD and AuSD and identify specific CHD lesions with higher odds of developing AuSD.

METHODS: We performed a 1:3 case-control study of children enrolled in the US Military Health System from 2001 to 2013. Children with International Classification of Disease, Ninth Revision, Clinical Modification codes for AuSD were identified as cases and matched with controls on the basis of date of birth, sex, and enrollment time frame. Each child’s records were reviewed for CHD lesions and associated procedures. Conditional logistic regression determined odds ratios (ORs) and 95% confidence intervals (CIs) for comparative associations.

RESULTS: There were 8760 cases with AuSD and 26 280 controls included in the study. After adjustment for genetic syndrome, maternal age, gestational diabetes, short gestation, newborn epilepsy, birth asphyxia, and low birth weight, there were increased odds of AuSD in patients with CHD (OR 1.32; 95% CI 1.10–1.59). Specific lesions with significant OR included atrial septal defects (n = 82; OR 1.72; 95% CI 1.07–2.74) and ventricular septal defects (n = 193; OR 1.65; 95% CI 1.21–2.25).

CONCLUSIONS: Children with CHD have increased odds of developing AuSD. Specific lesions associated with increased risk include atrial septal defects and ventricular septal defects. These findings will be useful for counseling parents of children with CHD.

Wednesday, October 9, 2019

Rexamining ADA

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

Andrew Pulrang at Forbes:
There are three compelling reasons why now is a good time to reexamine the Americans with Disabilities Act.
  • The core ideas of the ADA are more familiar than they were in 1990, but they sometimes feel out of date. Concepts like “reasonable accommodation,” “undue burden,” and “accessible” were originally meant to be flexible, for good reasons. But they often feel inadequate to the higher expectations of a new generation of disabled people.
  • Some of the most powerful aspects of the ADA today were barely thought of when it passed. For instance, the 1999 Olmstead Supreme Court decision continues to revolutionize long term care, while website accessibility looks to be the barrier removal battlefield of the future.
  • The disability rights movement that crafted the ADA pushed hard for its passage, mostly moved on to other goals, leaving the ADA vulnerable both to neglect and formal attack. In the 1990s, disability rights organizations like ADAPT and the National Council on Independent Living shifted emphasis from accessible transportation and passing the ADA, to expanding long term home care and helping disabled people get out of nursing homes and institutions. This was a logical choice at the time. However, each new Congress seems to include a new bill to weaken the ADA's accessibility mandates. Playing defense has worked so far, but that’s no guarantee that it will continue to work in future Congresses.
Also note a fourth reason.  In 1990, there was much less focus on developmental disabilities.  Indeed, the DSM-IV definition of autism still lay several years in the future.

Monday, October 7, 2019

1,250

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread

Technically, the United States has not lost measles "elimination" status, but...

From CDC: "From January 1 to October 3, 2019, 1,250* individual cases of measles have been confirmed in 31 states. This is an increase of seven cases from the previous week."

Variability in Medicaid Waivers

The Politics of Autism includes an extensive discussion of insurance and  Medicaid services for people with intellectual and developmental disabilities

Jessica Keim-Malpass, Leeza Constantoulakis, and Lisa C. Letzkus have an article at Health Affairs titled "Variability In States’ Coverage Of Children With Medical Complexity Through Home And Community-Based Services Waivers."  The abstract:
Even though children with medical complexity represent less than 1 percent of the US pediatric population, they are among the costliest users of the health care system. Much of the care for these children is delivered in home and community-based settings and covered by Medicaid waivers under Section 1915(c). Expenditures related to these waivers have been steadily increasing, with most recent estimates showing spending that exceeds $48 billion per year. Little is known about these waivers’ economic impact or effectiveness, because their components and coverage have not previously been well defined. Our study addressed this paucity of data by analyzing the scope of coverage offered by the waivers and evaluating how states are using them to cover children with medical complexity. We found great variability in how states choose to interpret scope of coverage and services offered, and this variability may have an impact on child and family outcomes.
From the article:
This analysis expanded upon the work performed by Douglas Leslie and colleagues 30–32
when they assessed Section 1915(c) waivers specifically for children with a diagnosis of autism spectrum disorder. As our study did, their work demonstrated that waivers targeting autism differ substantially across states in the types and breadth of services covered and restrictions (for example, cost containment strategies) used.30–32 When the authors applied service coverage as a predictor of child and family outcomes using
data from the National Survey of Children’s Health, they demonstrated that use of the waivers significantly decreased unmet needs for children with autism32 and that  increases in cost limits and enrollment limits (that is, allowing more children to be covered by a waiver for longer amounts of time) significantly reduced the likelihood that a parent had to stop working.30 We broadened the analysis by including waivers for all children, and our findings can be used in a similar fashion to assess the relationship between waiver characteristics and child or family outcomes for all children with medical complexity. Furthermore, formal economic evaluations are needed to understand the impact and effectiveness of waiver coverage and characteristics on health and family-centered outcomes, at both the individual and state levels.
30 Leslie DL, Iskandarani K, Velott DL, Stein BD, Mandell DS, Agbese E, et al. Medicaid waivers targeting
children with autism spectrum disorder reduce the need for parents to stop working. Health Aff
(Millwood). 2017;36(2):282–8.
31 Velott DL, Agbese E, Mandell D, Stein BD, Dick AW, Yu H, et al. Medicaid 1915(c) home- and community-based services waivers for children with autism spectrum disorder. Autism. 2016;20(4):473–82.
32 Leslie DL, Iskandarani K, Dick AW, Mandell DS,Yu H, Velott D, et al. The effects of Medicaid home and community-based services waivers on unmet needs among children with autism spectrum disorder. Med Care.
2017;55(1):57–63 

Sunday, October 6, 2019

Measles and Underimmunized, Close-knit Communities

In The Politics of Autism, I analyze the discredited notion that vaccines cause autism. This bogus idea can hurt people by allowing disease to spread

Manisha Patel and colleagues have an article at MMWR titled "National Update on Measles Cases and Outbreaks — United States, January 1–October 1, 2019."
During January–September 2019, 1,249 U.S. measles cases were reported, the highest annual number since 1992. Eighty-nine percent of measles patients were unvaccinated or had an unknown vaccination status, and 10% were hospitalized. Eighty-six percent of cases were associated with outbreaks in underimmunized, close-knit communities, including two outbreaks in New York Orthodox Jewish communities that threatened measles elimination status in the United States.

From HHS:
The United States has maintained its measles elimination status of nearly 20 years. The New York State Department of Health yesterday declared the end of the state’s nearly year-long outbreak that had put the U.S. at risk of losing its measles elimination status.
“We are very pleased that the measles outbreak has ended in New York and that measles is still considered eliminated in the United States. This result is a credit to the cooperative work by local and state health departments, community and religious leaders, other partners, and the CDC,” said HHS Secretary Alex Azar. “But this past year’s outbreak was an alarming reminder about the dangers of vaccine hesitancy and misinformation."
Perhaps the worst source of such misinformation is Azar's boss, Donald J. Trump, who has never retracted his comments that vaccines cause autism.

Saturday, October 5, 2019

Sulfate Deficiency

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:

At The Journal of Autism and Developmental Disorders, Richard J. Williams has an article titled "Sulfate Deficiency as a Risk Factor for Autism."   The abstract:
This is a study of water and beverages consumed during pregnancy by mothers of children with autism. Materials included vials for water samples and a survey to describe the water and beverages. Samples were tested for sulfate and surveys evaluated for average daily levels. Results were stratified for selected regions of the United States. Areas with the highest rates of autism showed a trend toward lower levels of sulfate compared to areas with low rates of autism (28% sulfate, n = 45, p = 0.059). Severe autism was associated with low sulfate levels while mild symptoms were associated with higher levels of sulfate (− 0.32 correlation, n = 86, p < 0.01). The results suggest that sulfate may be helpful in reducing both the incidence and severity of autism.

Friday, October 4, 2019

Morning Sickness

In The Politics of Autism, I discuss various ideas about what causes the conditionHere is just a partial list of correlatesrisk factors, and possible causes that have been the subject of serious studies:

Children whose mothers had hyperemesis gravidarum—a severe form of a morning sickness—during pregnancy were 53% more likely to be diagnosed with autism spectrum disorder, according to Kaiser Permanente research published in the American Journal of Perinatology.

"This study is important because it suggests that children born to women with hyperemesis may be at an increased risk of autism," said lead study author Darios Getahun, MD, Ph.D., of Kaiser Permanente Southern California Department of Research and Evaluation. "Awareness of this association may create the opportunity for earlier diagnosis and intervention in children at risk of autism."
Hyperemesis gravidarum occurs in less than 5% of pregnancies. Affected women experience intense nausea and are unable to keep down food and fluids. This can lead to dangerous dehydration and inadequate nutrition during pregnancy.
To determine the extent of the association between hyperemesis gravidarum and autism spectrum disorder, researchers reviewed electronic health records of nearly 500,000 pregnant women and their children born between 1991 and 2014 at Kaiser Permanente in Southern California. They compared children whose mothers had a diagnosis of hyperemesis gravidarum during pregnancy to those whose mothers did not.
Other findings from the research included:
Exposure to hyperemesis gravidarum was associated with increased risk of autism when hyperemesis gravidarum was diagnosed during the first and second trimesters of pregnancy, but not when it was diagnosed only in the third trimester.
Exposure to hyperemesis gravidarum was associated with risk of autism regardless of the severity of the mother's hyperemesis gravidarum.
The association between hyperemesis gravidarum and autism spectrum disorder was stronger in girls than boys and among whites and Hispanics than among blacks and Pacific Islanders.
The medications used to treat hyperemesis gravidarum did not appear to be related to autism risk.
The results are consistent with the hypothesis that women experiencing hyperemesis gravidarum have poor nutritional intake, which may, in turn lead to potential long-term neurodevelopment impairment in their children. The study cannot, however, rule out other possible explanations, such as perinatal exposures to some medications and maternal smoking.