Vaccine advocates urge ACIP to maintain public access to shots they say are saving lives

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Americans deserve access to vaccines against diseases that have a huge human and financial cost to the nation, said public health experts and advocates who spoke during the Sept. 19 session of the Advisory Committee on Immunization Practices (ACIP).

In recent years, ACIP, an advisory panel to the U.S. Centers for Disease Control and Prevention (CDC), has gotten new levels of public attention due to deliberations on the COVID-19 vaccine recommendations. The committee has been in the spotlight again due to actions of Health and Human Services Secretary Robert F. Kennedy, Jr. To restructure ACIP, he fired the existing members and replaced them with new members before the June meeting, then added additional new members for the Sept. 18 and 19 sessions. ACIP allowed 10 members of the public so speak for three-minute comment periods.

Protecting older adults

More Americans are aging — people aged 65 years and older will grow from 58 million to 82 million by 2050, said Robert Blancato, executive director of the National Association of Nutrition and Aging Services Programs. Using vaccines, including the COVID-19 and respiratory syncytial virus shots, to keep them healthy and out of the hospital is good for patients while reducing overall cost to the health system, he said.

“In just the past decade, the progress that has been made in the development of vaccines that specifically protect older adults has been astounding,” said Blancato, who described himself as a decades-long advocate for vaccine access. He also cited a letter led by the Alliance for Aging Research with numerous organizations recommending ACIP consider gold standard science while keeping the full schedule of vaccines, including the COVID-19 vaccine for people aged 6 months and older.

“Not everyone across the country will decide to receive every vaccine available to them, but everyone in this country should have the choice to receive a vaccine that is safe and effective and can protect their health,” Blancato said.

Removing undue barriers

Patients with asthma and other chronic conditions are at greater risk of complications from illnesses such as flu, pertussis, measles, mumps, rubella, COVID-19 and RSV, said Nissa Shaffi, director of advocacy at the Allergy & Asthma Network. They depend on vaccines, and insurance coverage for them through private insurers, Medicare Part D, and Medicaid, to maintain their health, she said.

We are concerned that any changes to the recommendations will result in vaccines not being covered by insurance, and will reduce or prevent people from getting the vaccinations they need,” Shaffi said. “Nearly 49% of adults under the age of 65 report cost barriers to asthma care and asthma costs the nation nearly $82 billion in annual health care costs. We must not introduce undue barriers that prevent people from fulfilling this vital duty to protect themselves, their families and their communities.”

Rely on the evidence

The hepatitis B vaccine was the first cancer-preventing shot, and newborns must get it early in live to maximize protection, said Noah Louis-Ferdinand, communications coordinator for Voices for Vaccines. That advocacy group works to supply credible vaccine information for families.

When considering changes on the hepatitis B shot, ACIP should consult worldwide experts on it, Louis-Ferdinand said. He also spoke about the ACIP deliberations on the COVID-19 vaccine and the need for credible evidence. ACIP presentations had some “very targeted presentations,” but some discussion was based on speculation or questionable data. Claims about the COVID-19 vaccine changing people’s DNA or causing cancer were not accurate, Louis-Ferdinand said.

“I'm obviously very sympathetic to anybody affected by cancer, but there really is no evidence to support this,” he said. “Early onset cancers have been rising, as was noted here, but that's a decades-long trend, going back before COVID even existed. My own beloved uncle unfortunately passed away years ago from brain cancer, so I understand just how serious of a claim is being made when we say that vaccines might cause cancer, and I think that's when you really have to bring solid evidence to make before kind of putting that out to public.”

A shocking revelation

Historically, ACIP members often came up through the committee’s working groups, gaining experience and undergoing more than a year of careful vetting. That led to a rigorous deliberative process about vaccines, said Candace DeMatteis, vice president of policy and advocacy for the Partnership to Fight Infectious Disease.

The current members were appointed outside that track, DeMatteis said.

“Respectfully, that does not build trust or confidence,” she said. The Sept. 18 “revelation that revisiting the hep B birth dose arose not because of new evidence of risk reduction or safety issues, but because of vaccine skepticism, was shocking. That is not gold standard science, and further erodes trust.”

She did note the Sept. 19 decision to table that discussion was the right decision, and she touched on the COVID-19 deliberations.

“Last year alone, polls estimate that more than 55 million American adults said they would definitely get a COVID booster,” DeMatteis said. “Their reasons vary and often include reducing risk to others. They should be able to make that choice.”

A committee in chaos

The “chaos” of the Sept. 18 session of ACIP could cause Americans to lose trust in ACIP, said Daniel Crawford, DNP, ARNP, CPNP-PC, CNE, FAANP, immediate past president of the National Association of Pediatric Nurse Practitioners.

“HHS Secretary has called for gold standard science and radical transparency and medical freedom, and instead, we're seeing the opposite,” Crawford said. “What we're seeing these past two days from the replacement committee was predetermined ideology, with individuals appointed just hours prior who ignored subject matter experts and comments from clinical liaisons who care for patients.”

Parents are confused and have limited choice due to ACIP’s deliberations about the hepatitis B and vote on the MMRV vaccine, held over Sept. 18 and 19, Crawford said.

“The replacement committee struggled to give rationale for the very reason the hepatitis B vaccine was even on the agenda to the point it was tabled,” he said. “Hepatitis B has one of the best safety profiles of all vaccines, and the birth dose has been used since 1991 preventing 99,000 deaths. The recommendation needs no changes.”

‘A war against vaccines’

Commenter Patricia Armstrong described herself as a 73-year-old woman with no medical or scientific background. But she has a desire for her children, grandchildren and future generations to grow up safe in a healthy world.

“There is currently a war against vaccines, which save lives, but now they're called dangerous poison, cause of autism, carry biomarkers or alter our genetics,” Armstrong said. “And because of this war, vaccination rates have been dropping. This makes our country and indeed our world less safe to live in. One result of this war is measles, once eradicated in our country, now making an unnecessary comeback. Even worse, our government clearly does not seem invested in vaccine science, developing new vaccines, or even providing the existing vaccines to the public.

“How to combat this: Get the public educated and involved,” she said. “Then once educated, encourage them to contact their representatives, demanding access to all vaccines and a new investment in vaccine development.”

She cited claims about formaldehyde, aluminum or mRNA in vaccines as being debunked. Large institutions devoted to health must do a better job communicating to the public, before people die of their own ignorance, Armstrong said.

A matter of medical freedom

Americans deserve clear, transparent and evidence-based recommendations from ACIP, CDC, and HHS that preserve access and respect individual medical freedom, said Richard H. Dang, PharmD, APh, an associate professor of clinical pharmacy and assistant director of residency programs at the University of Southern California.

ACIP should approve schedules and issue recommendations based on the best available evidence and avoid actions that limit choice or access. The committee should uphold its gold standard, evidence to recommendations framework and grade to keep recommendations anchored in evidence and transparency. Finally, ACIP should maintain and protect choice for Americans who want to protect themselves and family members, Dang said.

More than 13 billion COVID-19 vaccines have been administered worldwide; it is the most closely monitored vaccine ever and has demonstrated safety and effectiveness across the lifespan, Dang said.

“Based on current evidence, anyone six months in order who desires protection should be able to receive the vaccine without added restrictions,” he said. “For those who want to exercise their medical freedom and choose to get the vaccine, allow them the opportunities to do so.”

Trusting family physicians

In more than 40 years of medical practice, Steven Furr, MD, FAAFP, board chair of the American Academy of Family Physicians, said he recalls days when current vaccines did not exist. Furr described an all-night rotation listening to children struggle to breathe due to haemophilus influenza, type B epiglottitis. He has not seen a case in years, due to widespread use of Hib vaccines.

“I want to share concerns about changes to ACIP that undermine trust and put communities at risk for real world consequences like hospitalizations and deaths,” Furr said. “Surveys consistently show that Americans consider their personal physician to be the most trustworthy source of information on vaccines. Excluding family physicians from participating in ACIP decision making only weakens public trust in this group. Dismissing work group liaisons from the AAFP has reduced transparency in the evidence and process used to make recommendations.”

Glad for immunization

Working with patients with hepatitis B and liver cancer, their stories are painfully consistent: glad that children can be immunized against hepatitis B, or lamenting that patients did not know about the vaccine sooner, said Richard So, MPH, executive director of Hep B Free in the San Francisco Bay Area.

Some people believe hepatitis B is only a sexually transmitted disease or a drug-related disease. But the U.S. health care system is fragmented, so infant birth doses against hepatitis B catches people who may fall through the cracks, and prevents infections completely. Toddlers and children sometimes may play rough, and bites or scratches could lead to transmittal on the playground, So said.

‘The vaccine worked’

Wendy Lo spoke as a patient living with chronic hepatitis B. “I support the hep B universal birth dose vaccination to ensure newborns can receive the safe, effective anticancer and life-saving protection,” she said.

Lo said she was most likely infected at birth, before the vaccine was available. Among children infected at birth, 90% develop lifelong infections, and up to 25% may die of complications such as cirrhosis, liver failure and liver cancer, she said.

“I know firsthand what it's like to live with hepatitis B and its long-term consequences,” Lo said. “It means ongoing and lifelong medical needs, indefinite antiviral medication with no cure. It means ongoing time, money, energy, attention spent on navigating the health care labyrinth, insurance, specialty, pharmacy and recurring medical expenses. I live a life worrying about dying prematurely, diagnosed with cirrhosis.

“At one point, I didn't think I would see my children grow up,” she said. That led to “a dark, dark period with mental health challenges,” Lo said.

For years, people didn’t talk about hepatitis B due to misconceptions and stigma, Lo said.

“I would not want anyone to have to experience this chronic, deadly disease, especially when it can be prevented,” Lo said. “As a mother, I would do anything to keep my young ones safe thanks to the birth dose vaccine, my children are protected and prevented from hep B. My mother experienced guilt for passing this to me. This is a burden that luckily I do not have to carry. In contrast, I feel relieved to know the vaccine worked.”