FAQs For Veterans With CLL and SLL
If you have not yet enrolled in health benefits with the VA, please visit https://www.va.gov/health-care/how-to-apply/. This can be done online, by mail, or on-site and it is a separate process from applying for disability benefits.
After you have enrolled in VA health care benefits, you can schedule an appointment with a primary care provider at a VA clinic or medical center. You can find VA locations using this site: www.va.gov/find-locations or you schedule a VA health appointment here: https://www.va.gov/health-care/schedule-view-va-appointments.
Lastly, you can ask the VA primary care provider for a referral to the cancer clinic.
At this time, the VA treatments for CLL / SLL include acalabrutinib, zanubrutinib, ibrutinib, and venetoclax + obinutuzumab, so there are choices for first line treatments. Find out more through the Pharmacy Benefits Management Services and the VA National Formulary section.
Out-of-pocket costs for medications for CLL / SLL are likely lower with VA health care than with Medicare or private insurance, even if there isn’t a service-related cause for the CLL or SLL diagnosis.
Yes, such co-managed care by Veterans is common. Many Veterans have primary care providers at the VA and in the community. It is important to have all your providers be fully aware of all of the care you are getting. Getting input from research oriented CLL / SLL specialists outside of the VA may help you with complex decision making. Veterans may enroll in research studies, sometimes through their VA cancer clinic or at other institutions (although the VA will not cover costs of such research performed elsewhere).
If a Veteran lives a long distance from a VA hospital or clinic or has excessive wait times for care, they may be eligible for VA coverage within the community that they reside in. More information can be found at Community Care – Veteran Care Overview.
Some U.S. military Veterans have an increased risk of developing chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL), due to environmental exposures during service to the United States of America. This includes individuals who served in or near Viet Nam, the DMZ of Korea, or at Camp LeJeune during specified time periods. Also included are exposure to burn pits and other specific environmental hazards in Iraq, Afghanistan, or certain other areas. Veterans and their families may be eligible for Veterans Administration benefits, which may include disability payments, health care at little or no cost, long-term care services, support for dependents and funeral benefits.
The PACT Act passed in 2022 expands VA health care benefits for Veterans exposed to burn pits, Agent Orange, and other toxic substances. Some of these exposures have been linked to a range of health problems, including CLL and SLL. For more information see the following information:
If you served in the Republic of Vietnam or in or near the Korean Demilitarized Zone (DMZ) during the Vietnam Era—or in certain related jobs—you may have had contact with Agent Orange, an herbicide used to clear plants and trees during the war.
The VA released an updated list of Agent Orange exposure locations, which is much broader and can be found on Military.com.
Burn pits and other specific environmental hazards
If you served in Iraq, Afghanistan, or certain other areas, you may have had contact with toxic chemicals in the air, water, or soil.
Contaminated drinking water at Camp Lejeune
If you served at Camp Lejeune or MCAS New River between August 1953 and December 1987, you may be at risk of certain illnesses believed to be caused by contaminants found in the drinking water during that time.
Review the VA Public Health webpage about chronic B-cell leukemias.
It is recommended that you apply for VA benefits upon diagnosis if you qualify through service exposure. If you are denied due to the early stage of the disease, it is easier to update your initial claim if the disease progresses than begin a new claim.
The disability rating for those exposed to Agent Orange or burn pits for RAI Stage 0 versus higher will affect your application. Stage 0 typically includes no symptoms, no enlarged lymph nodes or spleen, and does not require treatment would be designated at 0% disability, which permits access to VA health benefits and services, but no cash payments. At this time within the VA, “active disease” is considered beginning at RAI Stage I or higher for CLL and SLL, which can be approved for 100% disability, including cash disability payments and other benefits.
Please find the Veterans Benefits Administration (VBA) Schedule of Rating Disabilities, and the specific disease for CLL / SLL would be The Hemic and Lymphatic Systems 4.117.
CLL / SLL disability claims require a review of medical records and an examination by a VA employed physician or completion and submission of a Public Disability Benefits Questionnaire (DBQ) by a cancer specialist outside of the VA.
There are also forms for the Veteran to complete. It is highly recommended that Veterans acquire help from a Veteran Service Officer (VSO) when filing a disability claim. The form to formally appoint a VSO is included below.
Please find the VA forms needed as well as recommendations for applying for VA benefits below.
- You will need to have your Service Record, VA Form DD-214.
- You will need to file a Disability Claim, VA Form 21-526EZ.
- You should have a local Veteran Service Officer (VSO) to assist you through this process and be your advocate. To appoint a VSO, complete VA Form 21-22.
- In case of emergency, you should designate a trusted person to speak and work on your behalf within the VA system should you be incapacitated by completing VA Form 21-0845.
- It is recommended that Veterans have a Public Disability Benefits Questionnaire (DBQ) completed by a non-VA doctor specializing in hematologic diseases to include with the disability application. For CLL / SLL it will be Hematologic and Lymphatic Conditions, Including Leukemia.
If you are a newly diagnosed Veteran or want to learn more about vaccinations and secondary cancer screenings visit Veterans with CLL / SLL.
Sign up to join a local CLL Society Patient and Caregiver support group. If you are interested in participating in a Veterans with CLL / SLL support group, sign up here.
Watch our archived CLL Society webinar Veterans with CLL: How to Get the Benefits and Care You Deserve.
Listen to different podcasts with fellow Veteran and CLL patient Bruce Wright.
Read the article Establishing CLL / SLL Care Within the Veterans Health System – One Veteran’s Story.
To contact CLL Society or be connected with a fellow Veteran with CLL, please email [email protected].
