Lack Of Gov. Trust To Blame For Measles Outbreak

Lack Of Gov. Trust To Blame. Public-health officials are counting on community insiders for help, including a nurse who has taken a personal approach. Lack Of Gov. Trust To Blame For Measles Outbreak

Example: The Tuskegee Study of Untreated Syphilis in the Negro Male was an infamous and unethical clinical study conducted between 1932 and 1972 by the U.S. Public Health Service.

Lack Of Gov. Trust To Blame

To fight the biggest measles outbreak in the U.S. in more than a quarter-century, public-health officials have tried robocalls, vaccination audits, vaccination orders and $1,000 fines. This is the standard playbook and it hasn’t worked to stop the disease’s spread.

Now, officials are increasingly counting on an informal network of community groups, religious leaders and local medical practitioners.

Blima Marcus, a 34-year-old oncology nurse practitioner, is working to counter antivaccination messages that have taken root in New York City’s insular ultra-Orthodox Jewish communities where measles has spread. Dr. Marcus, herself a member of an ultra-Orthodox community in Brooklyn, has gathered mothers in living rooms and written and printed booklets that challenge antivaccination assertions line by line. She wants to set up a hotline to explain the science behind vaccines and take questions.

“Simple education in a respectful, hand-holding manner really is going a lot further than anything else so far,” said Dr. Marcus, who has a doctorate of nursing practice.

It’s a tactic that is hard to replicate, is time intensive and relies heavily on the goodwill of volunteers with other jobs. But these days, it’s one of the best resources available to public-health officials who have struggled to contain the disease.

Standard public-health tools, which have been deployed successfully for years, are falling short in the face of an aggressive antivaccination campaign, growing exposure to measles in countries such as Israel, and a longstanding distrust of government or other outside sources of information. Since October, 423 cases have been reported in New York City.

Public-health authorities have had similar difficulties fighting measles in other close-knit communities in the U.S., including among the Amish in Ohio, Eastern Europeans in Washington state, and Somalis in Minnesota.

Grassroots approaches are becoming more important in public health, with infectious-disease outbreaks around the world—including Ebola in Democratic Republic of Congo—increasingly erupting in remote or insular communities, conflict zones and other areas where disease fighters have to grapple with economic, cultural or security challenges.

The Centers for Disease Control and Prevention has formed a work group to seek new ways to counter an increasingly vocal antivaccine movement. Trusted sources within a community’s own networks “can be more effective than we can” in educating people about vaccination, said Nancy Messonnier, an expert on immunization and respiratory diseases at the agency.

Vaccination rates among children have now reached a record high in the Williamsburg neighborhood of Brooklyn, the epicenter of the outbreak, officials say, due in part to outreach and a mandatory vaccination order implemented last month. Roughly 14% of young children in Williamsburg remain unvaccinated, the city’s health commissioner, Oxiris Barbot, said on April 17.

New public health tools are needed, said Herminia Palacio, New York City’s deputy mayor for health and human services, including an “aggressive counter-messaging campaign to really counteract the very intentional misinformation and disinformation that is being dangerously propagated by a small, but well-organized coalition of groups across the country.”

The stakes are high. Measles may be on a path to gain a foothold once again in the U.S., CDC officials warn.

Current Outbreaks

The outbreak in New York City, one of several current measles outbreaks designated by the CDC, is the longest-running in the U.S. since 2000, when measles was declared eliminated in the country. The majority of cases have been in Brooklyn, with 419 out of 423 cases occurring in the borough.

New York City’s measles outbreak began when an unvaccinated child was infected on a trip to Israel. It wasn’t huge at first, with fewer than 10 new cases every week. Early on, the city health department ordered more than 100 schools and day-care centers to exclude students who didn’t have the measles, mumps and rubella (MMR) vaccine. But children, most under age 4, kept getting sick.

In February, an unvaccinated, infected child at a Jewish school that didn’t enforce the health department’s exclusion order infected other unvaccinated children, resulting in 28 new cases. That led to 17 secondary transmissions outside the school, fueling a surge in cases that continues to this day.

Dr. Marcus, who works at Memorial Sloan Kettering Cancer Center, learned in October that antivaccination messages had taken root in ultra-Orthodox communities when a cousin in Lakewood, N.J., which has close ties to the Brooklyn neighborhoods, invited her to join a text group. Many women weren’t vaccinating their children, she said.

Alarmed by what she read, she did some research and began challenging claims that vaccines cause autism and cancer and that they can cause measles, citing scientific studies and data. “I hate liars,” she said of her reasons for taking on the antivaccination campaign.

Skepticism about vaccines has quietly grown over the past few years, spread through written materials, conference calls and face-to-face conversations, according to city officials and local pediatricians. A widely used dial-in phone line set up by Jewish women in the New York City area also contributed, they say, with recorded messages about everything from religion to parenting advice to lectures about “the truth about vaccines,” many of which are antivaccination in tone.

Some families have received religious exemptions to vaccination—a pathway some New York state legislators are trying to close.

A group called Parents Educating and Advocating for Children’s Health, or Peach, circulated a 40-page document titled “The Vaccine Safety Handbook: An Informed Parent’s Guide.” It mixed antivaccination claims with first-person stories and Jewish “points of interest.” The document included quotes said to be from Orthodox Jewish parents.

Authors of the Peach document didn’t respond to emails and calls for comment. Jennifer Margulis, a writer in Ashland, Ore., said the authors—parents in New York City’s ultra-Orthodox community—asked her to speak for them because they are afraid to respond, believing they face a “double hate” of being Jewish and against vaccination.

Parents do not become skeptical about vaccines over any one document, said Ms. Margulis, who described herself as a children’s health advocate who thinks parents should be able to choose whether they vaccinate their own children. Instead, they start questioning vaccines when a child has a bad reaction to one. She said the parent authors don’t understand why a magazine distributed five years ago has anything to do with the measles outbreak now.

Sholom Laine, who lives in the Crown Heights neighborhood of Brooklyn, hasn’t vaccinated his six daughters and two sons, who range from preschool age to teenagers. He and his wife, Esther, filed a lawsuit last year against a local yeshiva over the school’s reluctance to accept a religious exemption for their youngest, whom they had planned to enroll in fall 2018.

The child’s enrollment is still pending for the next school year, said Mr. Laine, who declined to specify the basis of the request for a religious exemption. He said the decision to vaccinate should be a personal choice. “In the 1950s they had the measles. And everybody had the measles at a point in time, or whatever, and it was all good,” he said.

Chaim Greenfeld, the father of two young sons in Williamsburg, takes issue with vaccine skeptics. “The people who don’t want to get vaccinated, it’s not acceptable to me. Totally not,” he said. “They don’t even have any Jewish reason that’s telling them not to do it.”

Several women in the text group Dr. Marcus had joined started messaging her privately after she responded to their concerns with scientific research, she said. They thanked her for her answers, saying they felt someone was taking their concerns seriously, not belittling or dismissing them outright as they felt others had, Dr. Marcus said.

“It’s the first time someone is giving us actual information, and doing it respectfully and not making them feel stupid,” she said they told her.

Sensing a thirst for information, Dr. Marcus organized three workshops, gathering 10 to 20 people at a time in living rooms or other venues, and leading them through slideshow presentations explaining vaccine science.

In January, she stopped leading the workshops after starting her job at Memorial Sloan Kettering, with longer hours than a previous position. Instead, she began putting together a book to counter the antivaccination assertions in the Peach handbook and training more nurses to run workshops.

Other nurses in the Orthodox Jewish Nurses Association, of which Dr. Marcus was president at the time, wanted to help, too. She and a team spent weeks researching and compiling a 110-page manuscript, calling it PIE, for “Parents Informed & Educated.”

The women at the workshops and in the text group had very detailed questions, so Dr. Marcus insisted on detailed responses. “The antivax movement has done a really good job,” Dr. Marcus said. Her audience members “need to have real data. They need to have really good answers.”

The nurses listed each claim they had found in the Peach handbook, followed by their findings and sources. Under “Having the measles will build my children’s immune systems and make them stronger,” they wrote, “False & Dangerous!” in big red letters, citing a 2015 study.

A section titled “Autism 101” featured a chart from a landmark Japanese study that showed autism rates continuing to rise even after the MMR vaccination rate declined significantly among children in one city.

Aware of Dr. Marcus’s work and with measles cases surging, the city health department asked her to distribute a version of the manuscript for Passover. They were concerned that the virus would spread further with holiday travel.

Dr. Marcus and her team rushed to prepare and print 10,000 copies of a 20-page version, called “A Slice of PIE.” The cover read: “Making PIEs Out of PEACH.”

“Parents cannot make good health choices for their children based on inaccurate information,” an introductory letter said.

One afternoon during Passover week, Dr. Marcus scrambled for helpers to distribute 7,000 copies of the booklet that were sitting in a friend’s garage, asking everyone she knew for help. Within a few hours, she found someone with a car, and another group with a shopping cart, to drop booklets into door slots, mailboxes and offices for $20 an hour.

The health department has asked Dr. Marcus to print 29,000 more copies of the PIE booklet to distribute to households.

Dr. Marcus and the group of nurses working with her have spent just under $12,000 of their own money covering costs so far. The organization she formed, called the EMES Initiative (“Engaging in Medical Education with Sensitivity”), has now secured funding from private donors to cover their costs, she said.

Dr. Marcus said it’s too early to know whether her approach is working. A little anecdotal evidence “shows we’re on the right path,” she said.

After one workshop, a woman got the MMR shot for her four children, she said. Another woman called a Google phone line Dr. Marcus’s group had set up, asking questions about the flu shot. She later got the shot for herself and her family, Dr. Marcus said.

Another group, the recently-formed Jewish Orthodox Women’s Medical Association, is launching a confidential hotline that families in the Orthodox Jewish communities can call to request vaccinations in their homes, for convenience and privacy. The group has formed a cadre of volunteer physicians to provide the service, said Eliana Fine, founder and CEO and a medical student at the Renaissance School of Medicine at Stony Brook University.

Steven Goldstein, a pediatrician in Williamsburg, found a handful of copies of the “A Slice of PIE” booklet when he returned to his office after Passover. He has asked for more copies to hand out to his patient families who questioned vaccines. “This is a little bit more approachable to the families in the community” than another booklet he has, he said.

Many parents still aren’t heeding a health-department recommendation that babies between 6 and 11 months get an MMR dose, he said.

“I’m hoping it will get a lot of traction,” he said of the booklet. “We’re not making as much progress as we’d like to make.” Lack Of Gov. Trust To Blame

What measures do you believe will be most effective to stop the current measles outbreaks? Join the conversation.

Updated: 5-13-2019

Measles Outbreaks, Up to 839 Cases, Show No Sign of Slowing

This year is the worst for measles in U.S. in 25 years.

The number of U.S. measles cases has reached 839 in 23 states, the Centers for Disease Control and Prevention reported Monday in a weekly update, as outbreaks in parts of the country showed no sign of slowing down.

The total is 75 more cases than the CDC reported a week ago. This year is the nation’s worst for measles in 25 years, and with seven months still to go in 2019, it is getting closer to topping the 963 cases reported in 1994.

Most of the cases are part of two outbreaks, in New York City and Rockland County, N.Y. Many other states are reporting either individual cases or small outbreaks.

Public health officials and members of the ultra-Orthodox Jewish communities where these large outbreaks are concentrated have been concerned that measles would take off following holiday travel for Passover in late April. The latest weekly increase in cases was more than the previous week, when there were 60 new cases. But it is still in line with weekly upticks of the past month or so.

The incubation period of measles from exposure to the time a telltale rash appears is normally 10 to 12 days, and up to 21 days. Then, it takes several more days for new measles cases to appear in the official statistics.

Measles was officially eliminated from the U.S. in 2000, so outbreaks generally occur when someone becomes infected in another country and then transmits the virus to others, usually unvaccinated people, in the U.S. California has had four outbreaks this year that were linked to international travel, according to the state’s department of public health. The state has reported 44 cases this year as of May 8.

San Francisco officials are investigating whether a pediatrician illegally gave medical exemptions to parents who don’t want to vaccinate their children for school entry.

California is one of three states in which only certain medical exemptions—such as having an allergy to a vaccine or undergoing chemotherapy—can be used to allow a child to attend school without inoculation against measles and other communicable diseases. West Virginia and Mississippi are the others.

Skepticism about vaccines is growing in the U.S., particularly in insular communities, where several measles outbreaks have occurred in recent years. Public health officials are increasingly turning to community groups and local medical practitioners to stem the outbreak in these communities.

Updated: 10-6-2022

Philadelphia Apologizes For ‘Inhuman’ Experiments At Holmesburg Prison

Inmates, mostly Black men, were subjected to abuse during medical experiments from the 1950s to the 1970s.

The city of Philadelphia formally apologized for experiments conducted for decades at the city’s Holmesburg Prison, calling the procedures “inhuman” and “horrific.”

From the 1950s to the 1970s, Albert Kligman, a faculty member in the department of dermatology at the University of Pennsylvania, used inmates at the prison for his research to test products such as facial creams and moisturizers.

The city said the experiments exposed inmates to pharmaceuticals, viruses, fungus, asbestos and dioxin, a component of Agent Orange.

The experiments exploited a vulnerable population, the most of which were Black men, the city said in a statement Thursday.

Although the experiments were conducted decades ago, the historical impact and trauma of this practice of racism in medicine continues to be felt today, said Philadelphia Mayor Jim Kenney, a Democrat.

“Without excuse, we formally and officially extend a sincere apology to those who were subjected to this inhumane and horrific abuse,” Mr. Kenney said. “We are also sorry it took far too long to hear these words.”

Mr. Kenney said the city, recognizing the distrust such experiments have created among communities of color, will continue to work to address the inequities and disparities that continue to this day.

Nearly 300 former inmates tried to sue Dr. Kligman in 2002, but the statute of limitations for doing so had expired. Dr. Kligman, who died in 2010, said in media interviews that his research was in line with accepted standards of practice at the time.

The University of Pennsylvania’s medical school issued its own formal apology in 2021 for the experiments. The university also ended an annual lectureship named after Dr. Kligman and renamed a professorship that bore his name.

The university said in its apology that Dr. Kligman’s work denied the inmates the informed consent now considered necessary for conducting ethical research. The university said the experiments were never morally acceptable, even if Dr. Kligman and his contemporaries believed them to be.

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