Summary of COVID-19 Vaccine Advocacy Efforts

In January, CLL Society spearheaded several advocacy efforts pertaining to COVID-19 vaccine prioritization for blood cancer patients. We joined together with several of our partner organizations (LLS, LRF, and IWMF) to submit letters to multiple state and government officials on behalf of the blood cancer patient community. Our goal was to remind them of the importance in following the emerging data surrounding the increased risks associated with blood cancer patients and COVID-19. Here is a summary of CLL Society’s recent advocacy efforts and our successes.

State Health Department Officials

CLL Society launched the first ever letter-writing advocacy campaign. Through our Click, Fill, Send Vaccine Prioritization Campaign, a customizable letter can be easily sent to key officials in your state. This letter allows individuals to personally request that blood cancer patients be moved to the front of the vaccination line if they are not already being prioritized in their state. As a result of this campaign, thousands of patient letters have already been submitted!

Advisory Committee on Immunization Practices (ACIP)

The ACIP committee is the body within the CDC that gathers to make decisions surrounding vaccination guidelines. States have been encouraged to follow their guidelines surrounding what groups of individuals should be prioritized to get the COVID-19 vaccination first. However, states are not required to follow their recommended guidelines. The letter was submitted as an official “written comment” to be reviewed and considered by the committee at their January 27^th meeting.

President Biden’s COVID-19 Task Force

Only a national, comprehensive approach can address the range of challenges that have impeded access to COVID-19 vaccines in the United States. A joint organizational letter was also submitted to the members of this newly formed committee. In addition to reminding them to follow the emerging data surrounding the increased risks in blood cancer patients, we urged the Task Force to advise states on streamlining vaccine registration processes to keep those processes from being overly burdensome for patients.

Governors in all 50 States

CLL Society discovered in December that there was a large variation across the United States in when CLL patients were going to be considered eligible to receive the vaccine according to each individual state’s COVID-19 vaccine distribution plan. Some states prioritized cancer patients among the most at risk, but many still have not. CLL Society, along with our partner organizations, corresponded individually by letter with each governor in all 50 states stressing the importance of prioritizing blood cancer patients in earlier phases of their state’s distribution plan.

The COVID-19 vaccine eligibility criteria in each state is continually undergoing reassessment and change. CLL Society will continue monitoring efforts as they evolve. We remain committed to advocating on behalf of our patients on this very important issue.

News Flash: We have Wins in 46 states

It started in New York, then California and Illinois. Now only four states have not prioritized CLL patients, namely Arizona, Maine, Nebraska, and South Carolina. All the rest are open for us or will be by April 1. Related to our efforts or not, this is excellent progress for the US from just six weeks ago and great news us all!

We have left up all the information for the first three states to make the change, but will ask you to check with your own state authorities to unravel the details in your locale.

New Yorkers with CLL were able to make appointments at state-run mass vaccination sites beginning February 14.

To prove the they have CLL, New Yorkers must provide documentation as required by the facility where they are getting vaccinated which must be either:

• Doctor’s Letter, or
• Medical Information Evidencing Comorbidity, or
• Signed Certification

Adults of any age with the following conditions due to increased risk of moderate or severe illness or death from the virus that causes COVID-19:

• Cancer (current or in remission, including 9/11-related cancers)….

That includes us.

For more details and the other covered conditions, see this official Feb. 13^th statement.

On Feb. 10^th, Illinois announced that they will be allowing patients with cancer including CLL to get vaccinated after Feb, 25^th, but many counties have not yet offered that expanded availability due to limited vaccine supplies.

On Feb. 12^th California Department of Public Health announced that:

Beginning March 15, healthcare providers may use their clinical judgement to vaccinate individuals age 16-64 who are deemed to be at the very highest risk for morbidity and mortality from COVID-19 as a direct result of one or more of the following severe health conditions:

• Cancer, current with debilitated or immunocompromised state….

That would be us! Click here to read the full text of the official Provider Bulletin. Unlike in New York, it is not clear at this time what if any proof of having CLL or other qualifying condition will be needed to be vaccinated.,

This is good news for all CLL patients in most of the country, though getting an appointment is not always easy. We will never know what role your letter writing campaign of 4,000 plus letters and our official efforts with the governors and the Biden Taskforce made in these decisions but we are proud to have worked with others in pushing these positive changes for the better over the finish line.

If your state (Arizona, Maine, Nebraska, and South Carolina) has not yet recognized the needs of the immunocompromised, please don’t give up hope. Please use our Click, Fill, Send Vaccine Prioritization Campaign to let your local decision makers know the facts. Stay strong because we are all in this together.