Coalition Calls for Clear COVID-19 Vaccination Policies

People living with cystic fibrosis (CF) need clear, aggressive, and science-driven COVID-19 vaccine distribution strategies that prioritize their condition, says a coalition of experts.

The Global Registry Harmonization Group (GRHG), composed of scientists and patient advocates, including the CF Trust, wrote a letter to the Journal of Cystic Fibrosis to express concerns that variations in global vaccine distribution programs often failed to prioritize people with CF.

CF is associated with a high risk of poor outcomes in cases of COVID-19 infection.

In a press release related to the letter, the CF Trust wrote that there have been more than 2,500 cases of COVID-19 among people with CF globally, and that an earlier study conducted by the GRHG identified a higher risk of severe infection in people who have had lung transplants or advanced lung disease prior to infection.

Even people younger than 18 with CF have shown a higher risk of hospitalization in cases of COVID-19. That risk has led many to shelter to a greater degree than others.

“In most countries, people in this clinically vulnerable group have had to self-isolate for the last 10 months,” the group wrote in their letter.

More recently, the GRHG conducted a global survey, consisting of the questions: “Have vaccinations in your country started?” and “Does your country have a national policy for vaccination of people with CF and if so, what is the priority schedule for them?”

Most countries that responded to the survey (15 of 21) had begun national vaccination programs, wherein the highest priority groups were mostly long-term nursing home residents and their care providers, healthcare workers, and people older than 80.

Prioritization did not follow a consistent pattern after these three groups.

Seven countries gave people with CF “no priority,” while others placed them in the next-highest tier after the top three groups. Except for six countries, most listed priorities for “high risk” people without specifying CF. Prioritization also varied by region in some countries.

“We are aware that premarket purchase has allowed some countries to get ahead in delivery of COVID-19 vaccines and that global equitable access should be a priority,” the group wrote. “Nevertheless, the disparity in prioritisation for people with CF across the globe is a concern.”

The CF Trust contends that people’s chances to return to normalcy relies upon scientifically sound and clearly communicated vaccine distribution programs.

Importantly, while many patients with rare diseases have expressed concern about the quick approval of COVID vaccines, regulators said the first two vaccines that received emergency use authorization in the U.S. — one from Pfizer and BioNTech, and the other from Moderna —  pose little risk to this patient population.

“People with CF need vaccine distribution strategies that are aggressive, predictable and adhere to science and medicine,” the GRHG wrote. “These strategies must be clearly communicated so that people with CF know how, when and where they can receive vaccination. Disparities in the availability of vaccinations for people with CF mean we must continue to advocate for them to get prioritisation.”