Veterans Benefits in CLL and Related Disorders

by: Edward Ratner, MD

Target Audiences:

This article is intended for multiple audiences:

• Veterans with CLL / SLL or MBL who would like to apply for US Department of Veteran Affairs (VA) benefits and their families,
• Veterans Service Officers, who help Veterans apply for VA benefits, and
• Oncology team members who want to help their patients who are Veterans get the benefits the VA might offer.

Background:

I wrote this article after hearing stories, while facilitating CLL Society support groups, from Veterans who have had difficulty navigating the application process to obtain their benefits through the Veterans Benefits Administration (VBA). Federal legislation passed in 2022 expanded eligibility for benefits for Veterans with chronic lymphocytic leukemia (CLL) / small lymphocytic lymphoma (SLL) but that law may have further confused some Veterans. The information I provide in this article was reviewed by Veterans, a Veterans Service Office, a manager from the VBA, and an attorney specializing in Veterans benefits. Much of the information I present was extracted from US government websites. An official review by the VBA was requested but declined. Therefore, this content should not be considered definitive in applying for VBA benefits.

Veterans Disability Benefits can offer significant monthly payments and allow access to other VA benefits. This article is intended to help Veterans with CLL / SLL and monoclonal b-cell lymphocytosis (MBL) navigate the complicated terminology, eligibility issues, and paperwork associated with VBA benefits. Definitions of these three similar conditions are offered later in this article. The VA disability application process can be done by a Veteran, but everyone I have spoken to recommends getting assistance from a qualified professional. Such a free service is available through state or county Veterans offices or from many of the Veterans Service Organizations, such as VFW, DAV, American Legion, etc. The advocacy and technical expertise of an attorney with expertise in Veterans benefits may be necessary when a benefits denial requires an appeal process. This type of attorney will only charge a percentage of the benefits received from the time of the original VBA application until approval. There will not be out-of-pocket costs if benefits are never approved. To find a qualified source of assistance with VBA applications, you can search the Office of General Counsel section at the VA website.

Veterans determined to have a VA defined service-connected disability may increase their access to VA health services, reduce or eliminate co-pays for VA covered health care, receive monthly disability payments, and be eligible for a variety of other benefits from each of the three branches of the Department of Veterans Affairs: the Veterans Health Administration (VHA), the Veterans Benefits Administration (VBA), and the National Cemetery Administration. Some state and local governments also offer benefits to service-connected disabled Veterans.

Disability is not defined by the VBA as all or none. The VBA definition of disability due to MBL and CLL / SLL doesn’t typically require any discomfort or physical or mental impairments in daily activities, only the diagnosis based upon lab tests and physical examination. The VBA has a ratings manual that allows for disability ratings from 0% to 100%. For Veterans with more than one type of disability, ratings can often be added together.

Even a single 0% rating, such as for MBL or early stage CLL / SLL, offers a Veteran an increase in priority rating for VHA health services. Another common condition that many Veterans may be eligible for at a low rating level is hearing loss. For some Veterans, even a 0% disability rating offers access to care within VA hospitals and clinics and the VA long-term care benefits (such as home care) by moving a Veteran up from the lowest priority score of 8. The disability rating may also eliminate co-pays for services covered by the VA or may offer access to services such as VA dental care. A 100% disability rating may be given for more advanced CLL / SLL, even without difficulty with usual day-to-day functioning. Such a rating provides a monthly disability payment of thousands of dollars, a wide variety of benefits from the VA (including dependent and survivor benefits), and sometimes local government benefits (e.g. discounts on property taxes, free public transportation).

Please find information on priority ratings and disability benefits on the VA website.

If an initial application for VBA disability is denied or the rating is less than 100% despite more advanced CLL / SLL, a VBA appeal should be considered, given the complexity of the rating process for this disease. A qualified professional should assist with that process.

In addition to motivating Veterans with MBL or CLL / SLL to consider applying for VBA benefits, this article may also help Veteran Service Officers assist Veterans and offer unofficial guidance to physicians completing a disability benefits questionnaire (DBQ) in support of a VBA benefits application.

Eligibility for VA Disability Benefits

The Sergeant First Class Heath Robinson Honoring our Promise to Address Comprehensive Toxics Act of 2022, (the PACT Act) expanded eligibility and improved review for VBA benefits for some Veterans with MBL or CLL / SLL.

In this law, the diagnoses of MBL and CLL / SLL are specifically listed as presumptive disorders for service-connected disability among Veterans with certain toxic exposures (including Agent Orange). This means that Veterans with MBL or CLL / SLL may be eligible for service connection disability rating based upon the diagnosis and exposure history, without having to provide evidence of the connection between military service and the MBL or CLL / SLL. The largest group of Veterans considered by VBA to have an exposure history associated with a higher risk of CLL / SLL or MBL are those who served even briefly in Viet Nam or on naval ships offshore. There are a number of other locations of military service that may be associated with an environmental exposure known to increase the risk of MBL or CLL / SLL. Please review the fact sheet on Presumptive Disability Benefits.

CLL and SLL Are the Same Condition

The National Institute of Health’s National Cancer Institute uses the same coding for CLL and SLL and states that:

“CLL and SLL are no longer coded separately because it is almost impossible to differentiate between the two diseases.”

As referenced from the NIH National Cancer Institute.

CLL / SLL Is Considered to Be a Leukemia by Veterans Benefits Administration (VBA)

CLL / SLL is categorized in a variety of ways by pathologists (who examine blood and tissue in a lab) and oncologists (who treat cancer). Although CLL / SLL is considered to be among the dozens of types of lymphoma, based upon its typical presence in lymph nodes, the VBA typically uses the criteria for leukemia disorders to determine eligibility for benefits for those with MBL or CLL / SLL.

Although the PACT Act described lymphomas as a presumptive disorder for Veterans exposed to burn pits, the VBA explicitly excludes MBL and CLL / SLL from the types of lymphomas automatically considered as a consequence of such exposure (as of August 10, 2023). Some Veterans have successfully obtained VBA benefits for MBL or CLL / SLL after burn pit exposure, but that requires providing an expert’s evidence of the connection of the exposure to the development of MBL or CLL / SLL, called a nexus letter. Each case is reviewed individually. Here is a VBA appeals decision letter describing one Veteran’s difficult journey to obtain benefits for a CLL diagnosis after burn pit exposure.

The process to consider a VBA application for benefits due to a toxic exposure that is not on the list of presumptive disorders is likely to require a specialized compensation and pension (C & P) examination to review exposures.

Veteran Benefits Administration (VBA) Rating Book Regarding CLL / SLL and MBL

The VBA published a rating manual for various conditions. The italicized text below is extracted verbatim from the section of that publication that applies to MBL and CLL / SLL.

Section 4.117 Hemic and Lymphatic Systems

Note (1): A 100 percent evaluation shall continue beyond the cessation of any surgical therapy, radiation therapy, antineoplastic chemotherapy, or other therapeutic procedures. Six months after discontinuance of such treatment, the appropriate disability rating shall be determined by mandatory VA examination. Any change in evaluation based upon that or any subsequent examination shall be subject to the provisions of §3.105(e) of this chapter. If there has been no recurrence, rate on residuals.

Note (2): Evaluate symptomatic chronic lymphocytic leukemia that is at Rai Stage I, II, III, or IV the same as any other leukemia evaluated under this diagnostic code.

Note (3): Evaluate residuals of leukemia or leukemia therapy under the appropriate diagnostic code(s). Myeloproliferative Disorders: (Diagnostic Codes 7704, 7718, 7719).

Definitions Related to VBA Benefits Manual

• MBL is a B-cell leukemia defined by a monoclonal elevation in B-cell lymphocytes, but below 5000/cubic centimeter (cc).  It is common in White older men (present in over 20%), less so in other groups. It is detected on a blood test called flow cytometry. Other names for this test include leukemia / lymphoma panel (in VA), B lymphocyte cell surface markers, or leukemia / lymphoma immunotyping.

• For CLL / SLL, defined as a monoclonal elevation of B-cell lymphocytes greater than 5000/cc or found on microscopic examination of a lymph node, the prognostic Rai Stages are:
• Rai 0 is a diagnosis of CLL without enlarged lymph nodes or spleen or low red blood cell or platelet counts.
• Rai I means CLL / SLL with enlarged lymph nodes
• Rai II means CLL / SLL with enlarged spleen
• Rai III means CLL / SLL with low red blood cell count
• Rai IV means CLL / SLL with low platelet count

Note: This Rai system of staging (i.e. determining how serious or advanced) of a patient’s CLL / SLL was widely used before the development of more recent types of genetic testing and advances in treatment protocols. The VBA uses this staging system to differentiate CLL that has yet to affect the size of lymph nodes or the spleen or affect the production of other types of blood cells, as it is relatively rare for Rai Stage 0 to cause any symptoms or require treatment for some years, so minimal (0%) disability rating is offered at Stage 0, while 100% is offered to eligible Veterans for Stage I- IV.

• The VBA defines “active disease” as Rai Stage I-IV.

• SLL has been differentiated from MBL and CLL as a finding of monoclonal B-cell lymphocytes in lymph nodes when the blood has less than 5000 lymphocytes per cc. The distinction from CLL is not biologically or prognostically significant. By definition, the presence of abnormal lymphocytes causing the diagnosis of SLL would be defined as at least Rai Stage I.

• “Residuals” in the Rating Book for CLL / SLL refers to conditions or symptoms that may result from the disease or its treatment. For example, immune deficiency, fatigue or night sweats may be considered a consequence of CLL even before the disease is considered “active” or requires treatment. The CLL / SLL might be rated at 0% due to Rai Stage 0, but disability ratings may be offered for such specific symptoms before treatment or after completion of treatment for CLL / SLL.

Rating Related to Treatment Status

• There is no need for treatment for MBL. The rate of progression to CLL (i.e. increase in lymphocytes to > 5000/cc) is about 1% per year.

• Treatment for CLL is only rarely recommended unless one of the criteria for Rai I or higher is met. Veterans with MBL or CLL / SLL at Rai 0 would generally be considered for a disability rating of 0%, but only if eligible for disability based upon their exposure history or other connection to military service, such as onset during active military service.

• The following situations might justify treatment for CLL at Rai Stage 0:
• Severe generalized symptoms such as fatigue or night sweats,
• Evidence of a rapid increase in lymphocyte counts, or
• Participation in a research trial of early treatment for those with a high risk of rapidly progressive disease, such as the EVOVLE CLL / SLL Study.

In such cases, the VBA should consider the second criteria for the 100% disability rating in their rating manual besides “active disease” (i.e. Rai Stage I – IV), which is “… or during treatment stage”.

• It is possible to have repeated infections due to CLL / SLL even at Rai 0 or while in remission after time limited treatment, with the benefit from treatment with immune globulin (IVIG) to reduce that risk. If the CLL / SLL is rated at 0% disability, this immune dysfunction may be considered as a residual condition and rated for that.  Please find this relevant information at the NIH National Library of Medicine.

• No treatments for CLL / SLL are currently considered curative. Time limited treatment leading to elimination of symptoms, inability to detect CLL cells in the blood (or bone marrow) on standard flow cytometry, and significant reduction in size of lymph nodes (and / or spleen) may be considered remission. A review of disability rating may occur six months after stopping treatment, which could lead to a reduction in disability rating. Continuous treatment protocols generally would not be associated with rating reviews or reduction in benefits even if symptoms resolve or the lymphocyte count returns to the normal range.

• Long-term sequelae of CLL / SLL or from treatment, even if remission is achieved, may be eligible for disability rating based upon such problems (residuals).

Disability Benefits Questionnaire (DBQ)

A DBQ completed by a VA or community oncologist helps VBA claims reviewers determine eligibility and disability rating. The DBQ for “HEMATOLOGIC AND LYMPHATIC CONDITIONS, INCLUDING LEUKEMIA” has a number of questions that should be answered carefully.

Listed below are the multiple-choice questions from the MBL and CLL / SLL DBQ. Following each question, I offer my best effort (in italics) to explain how someone completing the form might answer that question. A Veteran’s physician’s interpretation of the questions in the DBQ, given the specific characteristics of the disease for the Veteran, should supersede these suggestions for the various scenarios described.

A Veteran (or someone assisting in the VBA application process) should consider their answers to these questions in advance of an appointment to complete it. Compiling medical records is helpful, but creating a timeline of dates of diagnosis of MBL or CLL / SLL and all new diagnoses and tests since then will simplify accurate and thorough completion of the DBQ. The Veteran should come to an appointment with a list of their symptoms and be able to describe the impact of the disease on function and work.

The Veteran should ask for a copy of the DBQ after it is completed.

Below, the language in CAPS is copied directly from the DBQ and italicized sections are my interpretations and suggestions.

1A. CHECK THE CLAIMED HEMATOLOGICAL AND / OR LYMPHATIC CONDITIONS THAT PERTAIN TO THIS DBQ

NOTE: These are the diagnoses determined during this current evaluation of the claimed condition(s) listed above. If there is no diagnosis, if the diagnosis is different from a previous diagnosis for this condition, or if there is a diagnosis of a complication due to the claimed condition, explain your findings and reasons in the comments section. Date of diagnosis can be the date of evaluation if the clinician is making the initial diagnosis, or an approximate date determined through record review or reported history.

Check Leukemia for MBL or CLL / SLL, as this is the most appropriate choice among all of the hematological and lymphatic conditions.

If CLL / SLL, check CLL and enter ICD Code C91.1

If MBL, check Other and enter ICD Code D72.820

2B. IS CONTINUOUS MEDICATION REQUIRED FOR CONTROL OF A HEMATOLOGIC OR LYMPHATIC CONDITION, INCLUDING ANEMIA OR THROMBOCYTOPENIA CAUSED BY TREATMENT FOR A HEMATOLOGIC OR LYMPHATIC CONDITION?

YES / NO

Current treatments that would justify a Yes would include BTK inhibitors (e.g. acalabrutinib), CD20 inhibitors (e.g. Obinutuzumab), BCL2 inhibitors (e.g. venetoclax), or any experimental drugs for other pathways to treat lymphocytosis. This question would also be answered yes for treatments for hemolytic anemia or thrombocytopenia (e.g. steroids or IVIG). Ongoing treatment for hypogammaglobulinemia with IVIG would be answered No, however.

2C. INDICATE THE STATUS OF THE PRIMARY HEMATOLOGIC OR LYMPHATIC CONDITION:

ACTIVE / REMISSION / NOT APPLICABLE

VBA uses a definition of Active CLL / SLL as being Rai Stage I-IV. A clinician completing the DBQ could use that definition or may prefer a more clinical definition that considers symptoms that sometimes occur at Rai Stage 0 such as fatigue or night sweats as Active disease.

Complete remission from CLL / SLL has been defined since 2008 by evaluation at least 3 months after completion of treatment with flow cytometry showing less than 1/10,000 clonal cells, lack of lymph node > 1.5 cm on physical exam, lack of hepatic or splenic enlargement on physical exam, absence of constitutional symptoms, and blood counts above the following values. (1) Polymorphonuclear leukocytes 1.5 × 109/L (1500/μL) or more. (2) Platelets more than 100 × 109/L (100 000/μL). (3) Hemoglobin more than 110 g/L (11.0 g/dL; untransfused). Please find this relevant information at the NIH National Library of Medicine.

Not applicable would be an appropriate answer for Veterans with MBL or asymptomatic CLL at Rai 0.

3A HAS THE VETERAN COMPLETED ANY TREATMENT OR IS THE VETERAN CURRENTLY UNDERGOING ANY TREATMENT FOR ANY HEMATOLOGIC OR LYMPHATIC CONDITION, INCLUDING LEUKEMIA?

YES / NO, WATCHFUL WAITING

IF YES, INDICATE TYPE OF TREATMENT THE VETERAN IS CURRENTLY UNDERGOING OR HAS COMPLETED (Check all that apply)

The question about prior or current treatment is self-explanatory. The options for types of treatments include “TREATMENT COMPLETED; CURRENTLY IN WATCHFUL WAITING STATUS”. Given the choices offered, that would appear to include people who are in remission or have had a relapse or recurrence but haven’t yet started a new treatment. An interruption of current treatment that is planned to be temporary would NOT be a return to watchful waiting. The other options for types of treatment on this question include transplants, surgery, radiation, anti-neoplastic chemotherapy, and other procedures and treatments. Although the targeted therapies used currently in CLL / SLL are often not called chemotherapy by oncologists, for the DBQ it seems most appropriate to include them in this class of drugs (for lack of another option). The DBQ does not ask for the names of the drug(s) being currently used but wants the date of most recent treatment and anticipated date of completion. For current users of daily treatments, the current date could be used. For time limited protocols, the expected date of completion should be stated, but for continuous treatment (e.g. BTKi), state “Continuous, lifetime use planned”.

4A. DOES THE VETERAN HAVE ANEMIA OR THROMBOCYTOPENIA, INCLUDING THAT CAUSED BY TREATMENT FOR A HEMATOLOGIC OR LYMPHATIC CONDITION?

YES / NO

This question should be answered based upon the normal ranges from the lab where the blood count was recently performed. Follow-up questions in 4B request an explanation of causes of the anemia and / or thrombocytopenia, such as acquired hemolytic anemia or immune thrombocytopenia, which can occur prior to or along with the effects of CLL / SLL on bone marrow production. If thought solely due to CLL / SLL effects on the bone marrow, check YES for IS THE ANEMIA CAUSED BY TREATMENT FOR ANOTHER HEMATOLOGIC OR LYMPHATIC CONDITION? And put CLL (or SLL) in the box below that.

4G asks about need for treatment for acquired hemolytic anemia

4H asks about treatment and severity of immune thrombocytopenia

5A. DOES THE VETERAN HAVE LEUKEMIA, MULTIPLE MYELOMA, AGRANULOCYTOSIS, ACQUIRED, ESSENTIAL THROMBOCYTHEMIA, PRIMARY MYELOFIBROSIS, OR MYELODYSPLASTIC SYNDROMES?

YES / NO

Check CLL or MBL depending on the lymphocyte count (>5000 for CLL). If the diagnosis is SLL (with lymphocyte count less than 5000, but lymph nodes positive for monoclonal B cells), check CLL or check other and explain the SLL diagnosis.

5B. WHAT IS THE STATUS OF LEUKEMIA?

ACTIVE / REMISSION

For this dichotomous choice, use the definition above for remission, otherwise check ACTIVE (including for MBL).

Choices below ACTIVE / REMISSION are optional. None of them may apply.

For MBL or CLL without lymph node enlargement, anemia, thrombocytopenia, or liver / spleen enlargement, and without constitutional symptoms such as fatigue or night sweats, check Asymptomatic, Rai Stage 0.

The choices in 5B for treatment include options related to the types of drugs used in CLL / SLL, such as the use of molecularly targeted therapy with tyrosine kinase inhibitors (e.g. acalabrutinib). Options are for current use or in remission on this type of drug. Typically, complete remission as defined above is not achievable with this type of drug in CLL. Testing for remission using flow cytometry on this class of drugs is not routine. It is unclear what the DBQ means by “apparent remission”. For current use of venetoclax-based treatment protocols or other drug therapies, it may be appropriate to check the box for continuous use of myelosuppressive therapy, given the lack of other options or a comments box.

8A. DOES THE VETERAN HAVE ANY OTHER PERTINENT PHYSICAL FINDINGS, COMPLICATIONS, CONDITIONS, SIGNS AND / OR SYMPTOMS RELATED TO THE CONDITIONS LISTED IN THE DIAGNOSIS SECTION ABOVE?

YES / NO, IF YES DESCRIBE

Most Veterans with CLL / SLL will have physical findings (lymph nodes, organ enlargement), complications, conditions or symptoms (fatigue, night sweats or side effects of meds). This is a place to list issues like hypogammaglobinemia and secondary cancers (since they are known to be more likely in those with CLL / SLL). Include everything that has a temporal association with the CLL / SLL, such as anything that has occurred since the diagnosis of CLL / SLL, given the documented association of CLL / SLL with issues in almost every organ of the body.

9A. HAS LABORATORY TESTING BEEN PERFORMED?

YES / NO IF YES, PROVIDE RESULTS:

This is self-explanatory.

9B. ARE THERE ANY OTHER SIGNIFICANT DIAGNOSTIC TEST FINDINGS AND / OR RESULTS?

YES / NO IF YES, PROVIDE TYPE OF TEST OR PROCEDURE, DATE AND RESULTS.

At minimum, include flow cytometry, biopsies of nodes or bone marrow, and imaging of the lymph system and liver / spleen, to support the diagnosis and staging. Other blood tests may include liver and renal function and immunoglobulin levels. Include results of diagnostic work-ups for other conditions since the date of diagnosis of CLL / SLL (e.g. for skin cancer, reflux esophagitis, or cardiac arrhythmias which all may be more common in those with CLL / SLL, even without treatments known to increase the risk further).

10. DOES THE VETERAN’S HEMATOLOGICAL OR LYMPHATIC CONDITION(S) IMPACT HIS OR HER ABILITY TO WORK?

YES / NO  IF YES, DESCRIBE….

In addition to fatigue or sleep disturbance or burdens of treatment on work capacity, consider the impact of immune deficiency and fear of COVID-19 on ability to work. There may also be mental health impacts of a diagnosis of leukemia, even if the prognosis is typically good. This question is not asking if the Veteran can work at all, only if the diagnosis has an impact on ability to work.

Requests to oncologists regarding medical record documentation to support disability rating in addition to the DBQ should include:

• Document size and location of lymph nodes
• Document size of spleen
• Highlight anemia or low platelet count in the narrative of note and with lab reports
• State Rai Stage in note
• If Rai 1 or higher state that patient has “Active Disease”
• If on any treatment related to CLL (including IVIG), state that such treatment is related to the CLL / SLL.
• If there is a SLL diagnosis, state in record that this is the same disease as CLL, with the same biology, prognosis and treatment and provide Rai stage.

Conclusion

Some Veterans are eligible for benefits from the Veterans Administration due to their diagnosis of MBL or CLL / SLL. The application process can be complex. Professional assistance is likely helpful. Understanding the process, eligibility rules, and rating system can reduce stress. Organizing information about complete medical history since diagnosis so it can be included in the application (as attached records and on the DBQ) may expedite the process.

Dr. Edward Ratner is a specialist in geriatrics and palliative care a medical educator with personal and professional experience with CLL and with care of Veterans. He would like to gratefully acknowledge the assistance in drafting this article from staff from a local Veteran Benefits Administration office, Dr. Helen Ma, an oncologist at the Long Beach VA, Ryan Kegley, a Veteran Service Officer for Stanislaus County, CA and a number of Veterans. Dr. Ratner can be reached at [email protected].

The content is solely the responsibility of the author and does not necessarily represent the official views of the VA or the United States Government (except as directly quoted from government documents).