How the New Vaccine Recommendations Impact the Lupus Community

The landscape of preventative health is shifting. As we move into 2026, the Centers for Disease Control and Prevention (CDC) and the Department of Health and Human Services (HHS), led by Secretary Robert F. Kennedy, Jr, have introduced significant updates to vaccine recommendations.

For many, these changes may offer more flexibility. Still, for the chronic illness community—specifically those living with systemic lupus erythematosus (SLE)—there are a lot of questions and even concerns that this signals a move away from mandates toward "individualized medicine" that may increase the risk of contagious diseases.

Here is a breakdown of what the new 2025–2026 recommendations mean and how they specifically impact those living with lupus.

The "Shared Decision-Making" Shift

The most notable change in 2026 is the pivot from universal mandates to Shared Clinical Decision-Making (SCDM). One of the most controversial aspects of the update is the removal of the flu and COVID-19 vaccines from the universal recommendation list for healthy children and pregnant women.

While certain vaccines remain universally recommended, others are now categorized as decisions to be made between a patient and their healthcare provider. For someone with a chronic illness, this means your rheumatologist is now more than a specialist—they are your primary guide for immunization strategy.

While the CDC does not have the legal power to mandate vaccines (that power lies with individual states), most states tie their school entry requirements directly to the CDC’s "Routine" list. By moving these vaccines into the "Shared Decision-Making" category, the federal government is effectively signaling to states that these shots should no longer be mandatory for school attendance.

The 2025-2026 Respiratory Trifecta

The "respiratory season" (typically fall through spring) remains a high-priority window for those with lupus. Here’s what’s new:

• COVID-19: The 2025–2026 formulation targets the latest circulating sublineages (like KP.3 variants). For high-risk individuals, including those on immunosuppressants, the CDC emphasizes that the risk-benefit profile remains highly favorable, even as the general population moves toward individual choice.

• Influenza (Flu): All U.S. flu vaccines are now trivalent (protecting against three strains). For those with lupus, the "preservative-free" single-dose formulations are now the primary recommendation.

• RSV: Protection has expanded. It is now recommended for all adults aged 75+ and those aged 60–74 with chronic conditions. If you are 50–59 and have a high-risk condition like lupus, you may now be eligible for RSV protection under the updated 2026 insurance coverage mandates.

How This Impacts the Lupus Community

Lupus is a complex disease where the immune system is both overactive (attacking the body) and underactive (struggling to fight external infections). This creates a unique challenge for vaccination.

Many lupus patients are treated with immunosuppressive or “immune modulator” medications in order to control inflammation and the overactive immune system that lupus causes. These medications are often used when steroids are either not tolerated or not effective.

Some of these include:

• Cyclophosphamide (Cytoxan®)

• Methotrexate (Rheumatrex™)

• Azathioprine (Imuran®)

• Mycophenolate mofetil (Cellcept)

• Cyclosporine (Neoral, Sandimmune, Gengraf)

• Methotrexate (Rheumatrex)

• Leflunomide (Arava)

• Chlorambucil (Leukeran)

• *Note: Though corticosteroids are technically in a different class of medications, they can also suppress a person's immune system over time.

In addition to the increased risk of immunosuppression from medication, it is important to remember that with lupus, the body is spending a large amount of energy attacking the wrong cells by mistake, leaving you more susceptible to viruses and bacteria, which can lead to infections. Infections are the number two cause of death among those living with lupus.  A flu bug can turn deadly for those who have lupus and are on immunosuppressant medications. That is why it is very important to speak with your doctor about what vaccines are the right ones for you, and to make sure you comply with those recommendations.

The Question of Flares

A common concern for "Lupies" is whether a vaccine will trigger a disease flare. Recent 2025 studies have been reassuring:

• Safety Data: Long-term data show that modern vaccines (including mRNA and recombinant types) are generally well-tolerated in lupus patients.

• Flare Risks: While a small percentage of patients (roughly 3–11%) report mild flares post-vaccination, these are often linked to a history of recent flares rather than the vaccine itself.

Efficacy and Immunosuppressants

The "catch" for those with chronic illness is often not safety, but efficacy. If you are taking B-cell depleting therapies (like Rituximab) or high-dose steroids (prednisone > 20mg), your body may not produce a "gold standard" antibody response to a vaccine.

The new 2025 ACR (American College of Rheumatology) guidelines suggest:

1. Timing is Everything: Coordinating the timing of your vaccine with your medication cycle (e.g., waiting a certain number of weeks after a dose) to ensure your immune system is "awake" enough to respond to the shot.

2. Rheumatology guidelines have become much more precise. Instead of "just getting the shot," patients are now often advised to:

   • Hold certain meds: (e.g., holding methotrexate for 1–2 weeks post-vaccine).

   • Time the window: Waiting until just before your next infusion/dose to vaccinate when your medication levels are at their lowest "trough."

3. The "Ring of Protection": Since your response might be lower, the 2026 guidance emphasizes that household members should be fully vaccinated to create a protective "cocoon" around you.

Major Concerns for the Public

The medical community, including the American Academy of Pediatrics (AAP), has expressed "alarm" over this overhaul. Their primary concerns include:

• The Erosion of Herd Immunity: Vaccines work best when nearly everyone has them. When vaccines become "optional" or require a special effort to request, uptake usually drops. This creates "pockets" where viruses like the flu or meningitis can spread rapidly.

• "Clinical Friction": Critics argue that "Shared Decision-Making" is a hurdle. In a busy 15-minute pediatric appointment, if a vaccine isn't on the "routine" list, it may not even be discussed, leading to "accidental" non-vaccination.

• Insurance and Access: While insurers have pledged to cover these vaccines through late 2026, there is concern that if they aren't "routinely recommended," insurance companies may eventually stop covering them for healthy children, making them a luxury for those who can pay out of pocket.

The Impact on the Lupus Community

For those with lupus or other autoimmune conditions, "mandatory" vaccines for the general public are a form of communal protection.

• Increased Exposure Risk: People with lupus often take immunosuppressants (like CellCept or Benlysta) that make them more vulnerable to infections. If fewer children are vaccinated against the flu or rotavirus, the "viral load" in the community increases, making it much more dangerous for a lupus patient to go to a grocery store, a school, or a family gathering.

• The "Double Vulnerability": Many people with lupus cannot mount a strong immune response to vaccines themselves. They rely on the people around them being vaccinated to keep the virus from ever reaching them.

• Loss of Progress: Experts worry about the return of diseases like Hib (Haemophilus influenzae type b), which can cause meningitis. Before the vaccine became routine, it was a leading cause of childhood disability; for an immunocompromised adult, exposure to such "resurging" diseases could be fatal.

Action Plan: Questions for Your Rheumatologist

With the move toward shared decision-making, your next appointment is the perfect time to build your 2026 "Immunization Map." Consider asking:

• "Based on my current medication (e.g., Benlysta, CellCept, Saphnelo), what is the best window for me to get my flu and COVID shots?"

• "Am I eligible for the expanded RSV vaccine this year?"

• "Should we check my antibody titers to see if I need an additional dose?"

• "Are there any live-attenuated vaccines I must avoid?" (Note: Most annual respiratory vaccines are inactivated/recombinant and safe, but it's always good to verify).

A Note on Insurance

Despite changes in CDC "requirements," major insurers (via AHIP) have confirmed they will continue to cover ACIP-recommended vaccines with no cost-sharing through the end of 2026. This includes the updated COVID and flu shots for high-risk populations.

Compiled By: Kelli (Casas) Roseta

**All resources provided by this blog are for informational purposes only, not to replace the

advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog are owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2026.

Sources

• HHS Fact Sheet: CDC Childhood Immunization Recommendations (Jan 5, 2026) Official breakdown of the new three-tier system: "Routine," "High-Risk," and "Shared Decision-Making." HHS.gov Fact Sheet

• CDC Decision Memorandum (Jan 5, 2026) The formal document signed by Acting Director Jim O’Neill overhauling the U.S. immunization schedule. CDC Acts on Presidential Memorandum

• FactCheck.org: The Facts on the Vaccines the CDC No Longer Recommends (Jan 15, 2026) A deep dive into the six vaccines removed from the universal list and the scientific rationale cited by the administration. FactCheck.org Analysis

• CBS News: RFK Jr. Interview on Flu Vaccines (Jan 7, 2026) The original interview where Secretary Kennedy discusses the shift to shared decision-making and his views on childhood flu shots. CBS News Report & Video

• Politifact: What CDC Vaccine Schedule Changes Mean for Access (Jan 16, 2026) An explanation of how these changes might impact insurance coverage and the logistics of getting vaccinated at pharmacies. Politifact Access Guide

• American Academy of Pediatrics (AAP): Response to Schedule Changes (Jan 5, 2026) The AAP’s official stance calling the removal of universal recommendations "dangerous and unnecessary." AAP News Release

• American Medical Association (AMA): Statement on Childhood Immunizations (Jan 5, 2026) The AMA's critique of the decision-making process and its potential impact on public health trust. AMA Press Statement

• American College of Rheumatology (ACR): The Rheum Advocate (Jan 15, 2026) A report on how federal funding cuts to the CDC and policy shifts impact immunosuppressed patients. ACR Advocacy Update

• American College of Physicians (ACP): Warning on Vaccine Schedules (Jan 5, 2026) A "dire warning" regarding the adoption of international vaccine schedules in the U.S. context. ACP Online Statement