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Establishing CLL / SLL Care Within the Veterans Health System – One Veteran’s Story

In science and medicine, information is constantly changing and may become out-of-date as new data emerge. All articles and interviews are informational only, should never be considered medical advice, and should never be acted on without review with your health care team.

Edward Ratner, MD* – Minneapolis VA Geriatrics Research Education Clinic Center

Fewer than half of US military Veterans are enrolled for care by the Veterans Health Administration system. It is therefore common for a Veteran to receive a diagnosis of chronic lymphocytic leukemia or small lymphocytic lymphoma (CLL / SLL) at a doctor or hospital unaffiliated with the Veterans Administration (VA) health system. If the Veteran then considers using the VA health system, knowing how to navigate and advocate can make the process much easier. This article is based upon one Veteran’s, John Baker (a pseudonym), experience at the Minneapolis VA Medical Center, as told to and observed by me, a VA physician, geriatrics educator, and volunteer CLL Society support group facilitator.

John is married, with children and grandchildren in nearby communities. In his early seventies,’ he retired a number of years ago from working in medical equipment sales. He enjoys a variety of outdoor activities and spends part of the winter in Florida. He generally feels very healthy. In late 2022, he noticed a swelling in his left armpit and a smaller one under his chin. Blood tests were unremarkable. A biopsy of a lymph node demonstrated characteristics of SLL.

Like many people newly diagnosed with a form of cancer, John felt panic and dread. Reassurances from an oncologist at the University of Minnesota were somewhat helpful. Like some people with CLL / SLL, John decided to strictly limit who knew about his diagnosis. This reduced his need to explain the disease, at least until he was ready or knew more, but limited his network of support. Participating in CLL Society support groups (organized locally for anyone and nationally for those who are untreated, on Active Surveillance) offered greater emotional support.

Some years earlier, John had been diagnosed with heart disease. Because he served in Viet Nam and had been exposed to Agent Orange, he applied for and received some VA disability benefits for that. He learned that CLL / SLL was also an Agent Orange-related illness and applied for expanded disability compensation and benefits. That process is complicated, so he worked with a county Veteran Service Officer. Alternatively, he could have sought help from a Veteran Service Organization such as VFW or American Legion. Not knowing enough about CLL / SLL,  John told the Veteran Service Officer, “I don’t know” to the question about his stage of illness. The application for benefits wasn’t initially approved, even after detailed medical records were provided to the Veterans Benefit Administration (VBA). An appeal was filed, and VBA claims reviewers finally recognized that he was in Rai Stage 1 (because lymph nodes could be felt), and therefore assigned a 100% disability rating. Unlike John’s experience during the assessment of disability for heart disease, his SLL diagnosis didn’t require an examination by a VA-affiliated Compensation and Benefits physician.

John had been seen by an oncologist at the University of Minnesota a couple of times since the diagnosis last year. Despite research interests related to another form of lymphoma, that doctor was relatively inexperienced in caring for patients with CLL / SLL.  At our CLL Society support group meetings, I had encouraged John to seek a consultation from a VA oncologist, given the significant experience the VA has with this disease. The Minneapolis VA currently cares for over two hundred Veterans with CLL / SLL. In addition, VA care has no out-of-pocket costs for Veterans with 100% service-connected disability. Compared to Medicare coverage, that could save John thousands of dollars per year if/when treatment becomes necessary.  

The first step John took to get medical care in VA health services was enrollment, which you can find information about here. There are several ways to enroll. The fastest and most reliable method is to come to the VA hospital with discharge paperwork (DD214 or other separation documents). Intake staff are available to process an application without appointment. It is important to note that not every Veteran is eligible for VA health services. In addition, Veterans are assigned to a Priority Group, with the lowest Priority Groups typically having access to only emergency services and certain mental health services. Therefore, a Veteran who has neither a service-connected disability nor low income may be ineligible for VA cancer care. Sometimes, applying for disability for a non-cancer problem, such as hearing loss that could have been caused by exposure during military service, helps gain access to VA cancer care.

Once John was enrolled for VA health services, his next step towards cancer care in the VA was to make an appointment with a primary care physician. That can be done by calling the local VA Medical Center or preferred community clinic which you can find locations here, or going on-line to schedule an appointment.  Most primary care clinicians are in clinics at VA Medical Centers, but there are community sites throughout every state, called Community Based Outpatient Clinics (CBOC). John lives closest to the Minneapolis VA Medical Center, so he requested an appointment there. That appointment occurred several weeks after the enrollment paperwork was completed. There are also some options for care paid by the VA for care from community providers, designed for Veterans who live far from a VA facility or clinic.

VA primary care providers (physicians, nurse practitioners, or physician assistants) are responsible for specialty referrals, such as to the oncology clinic. I had given John the name of an oncologist who had an interest in CLL / SLL, so John requested a referral to him. The oncology clinic sent him an appointment date, although the name of the doctor he was going to see was unclear. An appointment was also set up for blood testing earlier in the day of that clinic appointment.

Many VA hospitals are affiliated with university medical schools. This means that a variety of health professional trainees participate in the care of patients at VA sites. John’s oncology appointment began with an assessment by an oncology fellow. She had already completed college, four years of medical school and three years of training in Internal Medicine. She was thus a fully trained, licensed doctor. She was now completing an additional two to three years of training focused entirely on cancer care. With this background, she was able to review John’s medical records from his non-VA physicians, ask questions focused on whether John had any symptoms from CLL / SLL (which he doesn’t have except for non-painful swollen lymph nodes), and perform a physical exam including examining the lymph nodes and feeling the abdomen to see if there is an enlarged spleen. 

After the fellow reported her findings to her supervisor, Dr. Mark Klein, (the oncologist I had recommended), they joined John and me to briefly review John’s history. He then provided basic education about CLL / SLL. This included explaining that John had a normal number of lymphocytes in his blood, but that abnormal growth of lymphocytes has occurred in his lymph nodes, meaning his condition is called SLL although this is practically speaking the same disease as CLL. Dr. Klein explained that the types of genetic mutations found in John’s lymphocytes meant he had an “intermediate risk” of needing treatment in the next five or so years, or about a 50% chance. He explained the two current approaches to treatment (both available at the VA), which are generally well tolerated and typically successful at reversing (but not curing) CLL / SLL. Dr. Klein also explained that there is much research going on in this disease, with some studies being performed at the University of Minnesota, and typically also available at the Minneapolis VA.

Upon questioning, Dr. Klein explained that the cancer clinic has a psychologist to help with mental health issues that often arise among people with cancer, such anxiety and depression. He also offered to make a referral for a dermatology examination, which is recommended annually for people with CLL / SLL. Decisions regarding vaccinations recommended for those newly diagnosed with CLL / SLL were deferred to John’s primary care physician.

After the visit, John expressed to me great satisfaction with the appointment and felt he now understood his condition much better. He had confidence in the care he would receive from the VA health system. On the way to get a cup of coffee in the hospital cafeteria (from the Starbucks located there), we stopped by the Travel Office. There he learned that he qualified for reimbursement for mileage to and from his appointments (at $0.425/mile). We then went to the front desk of the hospital, where he had his picture taken for a VA ID card.

Over coffee, we chatted about the other benefits he receives as a result of being recognized as a disabled Veteran. These vary by state. In Minnesota John gets a discount on his homeowner’s property taxes, free hunting and fishing licenses, free use of local public transit, and free State Parks passes.

John plans to follow-up with VA care as recommended by his doctors. That is typically every three to six months in the first year or two after diagnosis, to assess speed of changes in blood counts and size of lymph nodes and to offer reassurance.  He will also continue to participate in CLL Society Support Groups, which led him to obtain care for his CLL at the VA.

*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.

This story was reviewed and generously approved for distribution for educational purposes by the Veteran and Dr. Mark Klein.