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Social Security Disability Benefits for Leukemia

Bowman, DePree & Murphy

How Does the Social Security Administration Decide if I Qualify for Disability Benefits for Leukemia?

If you have acute or chronic leukemia, Social Security disability benefits may be available. To determine whether you are disabled by leukemia, the Social Security Administration first considers whether your leukemia is severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process. See Winning Social Security Disability Benefits for Leukemia by Meeting a Listing. If you meet or equal a listing because of leukemia, you are considered disabled. If your leukemia is not severe enough to equal or meet a listing, the Social Security Administration must assess your residual functional capacity (RFC) (the work you can still do, despite your leukemia), to determine whether you qualify for benefits at Step 4 and Step 5 of the Sequential Evaluation Process. See Residual Functional Capacity Assessment for Leukemia.

About Leukemia and Disability

What Is Leukemia?

Leukemia is a form of cancer arising in the bone marrow. Through a process known as hematopoiesis, the bone marrow produces the various types of cells that appear in the blood, including red blood cells (RBCs), platelets, and the various types of white blood cells (WBCs) (see Figure 1 below). In leukemia, the bone marrow produces excessive amounts of some type of white blood cell. The WBCs produced cannot carry out their normal functions because they are flawed.

During the process of hematopoiesis, white blood cells begin as blasts. Normally, the blasts then mature into more differentiated forms that carry out specific functions. For example, lymphoblasts eventually turn into mature lymphocytes; myeloblasts become granulocytes. In leukemia, the blasts do not mature properly.

Normal total white cell count in the blood is about 5,000 to 10,000/mm3. In leukemia, the WBC can rise into the 100,000/mm3 range or higher. Red blood cell production is decreased causing (often severe) anemia. Platelets may also be abnormal with high or low counts.

Figure 1: The composition of blood, including white and red cells and platelets.

Symptoms of Leukemia

Symptoms of leukemia include fatigue and weakness. Patients are often pale from anemia and perhaps bleeding abnormally from some area in the body. Bleeding into the skin produces red-purple spots called petechiae.

Bone pain is common in acute leukemia. Involvement of the skin (leukemia cutis) may be present in a number of forms, such as ulcerations, blisters, raised, flat, or other lesions. Such involvement outside of the blood and bone marrow carries an even worse prognosis than acute leukemia.

Acute Leukemia

All cases of acute leukemia qualify for Social Security disability benefits based on the documented diagnosis. That diagnosis should come from a copy of the formal pathology report about the bone marrow biopsy. See Meeting Social Security Administration Listing 13.06A for Acute Leukemia.

In acute leukemia, the white cells involved are more immature and tend to be more toward the blastic end of development. These leukemias are more dangerous than the chronic forms involving more mature white cells. In adults, acute myelocytic leukemia (AML) is most frequently seen. There are other types of acute leukemia, such as acute monocytic leukemia or acute eosinophilic leukemia that involve different types of white cells. A rare form of hematologic (blood) cancer is hairy cell leukemia, which responds well to chemotherapy.

Over 10,000 new cases of AML are diagnosed yearly in the U.S. and about a third of these patients have a mutation in the FLT3 gene, which in turn produces an abnormal enzyme (tyrosine kinase) that drives the production of leukemic cells. Individuals with the FLT3 gene mutation have only a 10% to 20% cure rate, compared to individuals with other forms of AML who have a cure rate of 40% to 50%. In AML, patients under 60 years of age can expect a remission in 70% to 80% of cases with a 5-year survival of 40% to 50%; older patients only achieve complete remission in about 50% of cases with a 5-year survival of less than 10%.

Experimental drugs known as tyrosine kinase inhibitors are under development, and will probably greatly increase cures while eliminating the toxic side effects of the drugs usually required to treat acute leukemia. A different tyrosine kinase inhibitor used to treat chronic leukemia (Gleevec, imatinib) has been very effective, but is specific for chronic leukemia and will not work for acute leukemia. See Treatment of CML.

Treatment of Acute Leukemia

Chemotherapy is the treatment for acute leukemia, but in some instances a bone marrow or stem cell transplant is done. Some cases are incurable. A state in which there is no evidence of the leukemia after treatment is called remission, but it is not necessarily a cure because a relapse can occur. The longer a remission lasts, the more likely a cure has been achieved. To achieve a complete remission, which is the goal of treatment, there must be no detectable abnormal cells in peripheral blood or bone marrow aspirations.

If bone marrow transplantation is carried out at the time of the first relapse or second chemotherapy-induced remission, a cure can be achieved in about 30% of cases. That figure increases to 50 – 60% if the transplant is done during the first complete remission.

Chronic Leukemia

The chronic leukemias involve proliferation of white cells of a more mature and less cancerous variety than the acute leukemias. Chronic leukemias, while they are extremely serious diseases, do not tend to be quite as severe as the acute forms of leukemia. For that reason, a claimant is not automatically awarded Social Security disability benefits simply based on a diagnosis. See Meeting Social Security Administration Listing 13.06B for Chronic Leukemia.

Some people with chronic leukemia live for years with treatment. For example, some cases of chronic lymphocytic leukemia (CLL), which usually occurs in older people, require no treatment, or only modest treatment. Chronic myelogenous leukemia (CML) causes death in a substantial proportion of people within several years of diagnosis, even with treatment. Advances in treatment, including stem cell or bone transplantation and new drugs, continue to improve the prognosis.

Blastic Transformation of Chronic Leukemia into Acute Leukemia

The danger of a chronic leukemia, especially CML, is that it will change into an acute leukemia—acute myeloblastic leukemia (AML). The change of chronic to acute leukemia is known as a blastic transformation and is associated with an extremely high mortality, usually from infection. A blastic crisis means the majority of granulocyte white blood cells called myelocytes regress to a more immature stage of development in which they are both incapable of their normal specialized functions and are more aggressive as a blood cancer. So, a blastic transformation or crisis is the event most dreaded after diagnosis of CML.

Treatment of CML (Chronic Myelogenous Leukemia)

The transformation of normal myelocytic white blood cells into the cancerous cells of CML occurs by production of an abnormal protein known as BCR-ABL, which enables the cancer cells to live and proliferate. This protein is created by a specific enzyme known as tyrosine kinase.

Several different drugs inhibit tyrosine kinase so that the abnormal BCR-ABL protein cannot be created. Imatinib (Gleevec) is the first drug of its type to target a specific enzyme involved in the leukemic disease process. The side effects of imatinib are infrequent compared to conventional chemotherapeutic agents because it is not broadly toxic to cells like conventional chemotherapy. Nearly 25% of conventional chemotherapy patients will have severe side-effects and they will be much worse than with imatinib.

The overall 5-year survival with imatinib is about 83%, and about 63% remain in major cytogenetic (chromosomal) response after that amount of time. The best predictor for both overall and progression-free survival is a cytogenetic response at one year.

Imatinib can be toxic to the heart in patients with some conditions (hypereosinophlic syndrome and cardiac involvement, or chronic eosinophilic leukemia). These effects are generally controllable with corticosteroids. Older patients who have additional disorders may risk left ventricular dysfunction and congestive heart failure. See Can I Get Social Security Disability Benefits for Congestive (Chronic) Heart Failure? These serious side-effects are unusual; imatinib is usually well-tolerated.

In one study comparing Gleevec to standard chemotherapy with interferon and cytarabine, Gleevec was found to be about 10 times as effective in controlling CML. After 14 months, 68% of patients who received imatinib were completely free of leukemia, compared to only 7% of the interferon-cytarabine group. Furthermore, a much smaller number of patients in the Gleevec group progressed to more serious disease—blastic transformation. Unfortunately, if the patient has already entered a blastic crisis, Gleevec is much less effective, as are other medications. Once a blastic transformation occurs, Gleevec does not improve the very poor survival of standard chemotherapy when used alone. However, far fewer CML patients (1.5%) develop a blastic crisis than would otherwise be the case.

After 5 years of treatment, about 25% of patients taking imatinib discontinue it because of side effects or poor response.

Another tyrosine kinase inhibitor has been developed to be used as a second-line treatment of CML when imatinib fails. Dasatinib (Sprycel) is an oral drug that can be used in all phases of CML, including blastic transformation. A complete hematologic response has been seen with dasatinib in 92% of patients in the chronic phase of CML, and significant improvement in 70% of patients with accelerated CML, CML blast crisis, or Philadelphia chromosome positive acute lymphocytic leukemia (ALL). In one study, 85% of CML patients had achieved a complete hematologic response after 6 months of treatment with dasatinib.

Another tyrosine kinase inhibitor known as nilotinib (Tasigna) was FDA-approved in October 2007 for use in cases resistant to imatinib. A complete hematologic response with no evidence of leukemia has been achieved for at least 6 months using nilotinib. Its long-term effectiveness will require more time to determine. However, nilotinib appears to have more serious and diverse side-effects than imatinib, including thrombocytopenia, neutropenia, and cardiac toxicity, all of which carry a risk of death. Nilotinib can also be used in the accelerated phase of CML in which the disease is progressing with 10-19% blastic forms in peripheral blood. Still, chances of survival with nilotinib are far better than can be expected from untreated CML, which is certain death.

Regardless of the type of treatment, blastic transformation of either CML or CLL is associated with a survival of about 2 to 11 months, depending on the study. Those with lymphoid blastic transformation, as with conversion of chronic lymphocytic leukemia to acute lymphocytic leukemia (CLL to ALL), tend to live a few months longer than those who transform from chronic myelogenous leukemia to acute myelogenous leukemia (CML to AML). The worst prognosis is present when white cells are rapidly progressing to more immature forms and peripheral circulating blood has more than 50% of such blasts.

Winning Social Security Disability Benefits for Leukemia by Meeting a Listing

To determine whether you are disabled at Step 3 of the Sequential Evaluation Process, the Social Security Administration will consider whether your leukemia is severe enough to meet or equal the leukemia listing. The Social Security Administration has developed rules called Listing of Impairments for most common impairments. The listing for a particular impairment describes a degree of severity that Social Security Administration presumes would prevent a person from performing substantial work. If your leukemia is severe enough to meet or equal the listing, you will be considered disabled.

The listing for leukemia is 13.06. It has 2 parts. Part A is for acute leukemia and part B is for chronic leukemia. You will be disabled if you satisfy either part.

Meeting Social Security Administration Listing 13.06A for Acute Leukemia

You will meet listing 13.06A if you have acute leukemia (including T-cell lymphoblastic lymphoma). You will be considered under a disability until at least 24 months from the date of diagnosis or relapse, or at least 12 months from the date of bone marrow or stem cell transplantation, whichever is later. Thereafter, any residual impairments that you have will be evaluated under the Social Security Administration’s criteria for the affected body system.

T-cell lymphoblastic lymphoma is an extremely aggressive form of lymphoma that is closely related to, if not a different manifestation of, T-cell acute lymphoblastic leukemia and so is included by the listing (see Figure 2 below).

Lymphatic System 1)

Figure 2: Abnormal lymphocytes travel via the lymphatic system in lymphoblastic lymphoma / leukemia.

Part A is unambiguous. Any form of acute leukemia results in an automatic allowance of disability benefits for at least 24 months from the date of diagnosis or relapse or 12 months from stem cell or marrow transplantation, whichever is later.

The initial diagnosis of acute leukemia is based on definitive bone marrow examination. Additional diagnostic information is based on chromosomal analysis, cytochemical and surface marker studies on the abnormal cells, or other methods consistent with the prevailing state of medical knowledge and clinical practice. Recurrent disease must be documented by peripheral blood, bone marrow, or cerebrospinal fluid examination. The initial and follow-up pathology reports should be included.

The standard for diagnosis of leukemia has been unchanged for many years—microscopic evaluation of bone marrow smears. If the examining pathologist and treating hematologist-oncologist interpret the bone marrow as diagnostic of acute leukemia and therapy proceeds accordingly, any question should be resolved in favor of the claimant.

In regard to relapse (recurrence), bone marrow biopsy information will probably be available. However, once the initial diagnosis has been established by prior bone marrow biopsy, a recurrence can also be documented by peripheral blood smear or identification of leukemic cells in cerebrospinal fluid. A bone marrow biopsy is not required to document relapse.

Meeting Social Security Administration Listing 13.06B for Chronic Leukemia

You will meet listing 13.06B if you have chronic myelogenous leukemia, as described in 1 or 2:

1. Accelerated or blast phase. You will be considered under a disability until at least 24 months from the date of diagnosis or relapse, or at least 12 months from the date of bone marrow or stem cell transplantation, whichever is later. Thereafter, any residual impairments you may have will be evaluated under the criteria for the affected body system; or

2. Chronic phase, as described in a or b:

a. You will be considered under a disability until at least 12 months from the date of bone marrow or stem cell transplantation. Thereafter, any residual impairments you may have will be evaluated under the criteria for the affected body system.

b. Progressive disease following initial antineoplastic therapy.

Part B.1 is satisfied by the presence of a blastic transformation of leukemia. When chronic myelogenous leukemia (CML) undergoes blastic transformation, it has essentially converted to an acute myelocytic leukemia. Part B.1 criteria are the same as part A of the listing, above.

Part B.2 deals with evaluation of the chronic phase of CML. Before the advent of bone marrow and stem cell transplantation and the development of tyrosine kinase inhibitors for the treatment of CML, the prognosis was grimmer and the Social Security Administration had a policy of finding listing-level equivalence for any new diagnosis of CML even though there was no blastic transformation. With a change in prognosis, that policy is no longer applicable.

Part B.2.a is consistent with other listings in giving at least 12 months of automatic allowance following treatment with stem cell or bone marrow transplantation. This allowance cannot be shortened by any other medical factors, such as the opinion of treating or other physicians that your prognosis is favorable.

Part B.2.b is probably the most problematic part of this listing. The listing is satisfied by progressive disease following treatment, as defined by cancer which has become “more extensive.” For a solid tumor cancer, such a requirement could easily be identified by the development of any metastases. However, this part of the listing could be more problematic for some adjudicators in the case of leukemia, a disorder that does not begin as an identifiable solid primary tumor.

Often the diagnosis of CML comes about by the onset of symptoms and signs (e.g., chronic fatigue, infection), and the detection of abnormal peripheral (circulating) blood, followed by a diagnostic bone marrow biopsy. The question could arise regarding how the CML can be “more extensive,” in view of the presence of leukemic cells throughout the blood. In the absence of more specific policy guidance from the Social Security Administration, “more extensive” could reasonably be interpreted to mean (1) increase in severity, as appreciated by repeated blood or bone marrow smears showing increased abnormality despite treatment (especially if changes in the treatment regimen are required); or (2) leukemic cell infiltration into organs—despite treatment—such as the brain, spleen, liver or intestine. (Such infiltrations could be identified by either imaging or biopsy.) Leukemia cells can intrude into any tissue, including the eye or muscles and peripheral nerves that serve limb function. Leukemic cells are not spread only by the bloodstream; they can also move through lymphatic vessels and infiltrate tissues in that manner

This listing specifies chronic myelocytic leukemia as the only form of chronic leukemia to be considered. T-cell chronic lymphocytic leukemia (T-cell CLL) and prolymphocytic leukemia (PLL) have such a poor prognosis that they also should be considered under this listing. However, this is not official policy by the Social Security Administration.

Residual Functional Capacity Assessment for Leukemia

If your leukemia is not severe enough to meet or equal a listing at Step 3 of the Sequential Evaluation Process, the Social Security Administration will need to determine your residual functional capacity (RFC) to decide whether you are disabled at Step 4 and Step 5 of the Sequential Evaluation Process. RFC is a claimant’s ability to perform work-related activities. In other words, it is what you can still do despite your limitations. The lower your RFC, the less the Social Security Administration believes you can do.

An RFC for physical impairments is expressed in terms of whether the Social Security Administration believes you can do heavy, mediumlight, or sedentary workin spite of your impairments. An RFC for mental impairments is expressed in terms of whether Social Security Administration believes a claimant can do skilled, semi-skilled, or unskilled work in spite of impairments, or whether the claimant cannot even do unskilled work.

You should not be assigned an RFC simply on the basis of remission from leukemia. Although remission may result in no significant limitations, the Social Security Administration should not assume that you have no significant limitations just because your leukemia is in remission.

Conditions that may affect your ability to function on the job and that the Social Security Administration should evaluate, even if you are in remission, include:

  • Anemia and its contribution to weakness and fatigue.
  • Organ toxicity, such as to the lungs, nervous system, and heart, from chemotherapy.
  • Tissue damage from leukemic infiltrates or infection, which could have long-term consequences.
  • Radiation to local leukemic infiltrates, which can also permanently damage tissue.

Getting Your Doctor’s Medical Opinion About What You Can Still Do

Your Doctor’s Medical Opinion Can Help You Qualify for Social Security Disability Benefits

The Social Security Administration’s job is to determine if you are disabled, a legal conclusion based on your age, education and work experience and medical evidence. Your doctor’s role is to provide the Social Security Administration with information concerning the degree of your medical impairment. Your doctor’s description of your capacity for work is called a medical source statement and the Social Security Administration’s conclusion about your work capacity is called a residual functional capacity assessment. Residual functional capacity is what you can still do despite your limitations. The Social Security Administration asks that medical source statements include a statement about what you can still do despite your impairments.

The Social Security Administration must consider your treating doctor’s opinion and, under appropriate circumstances, give it controlling weight.

The Social Security Administration evaluates the weight to be given your doctor’s opinion by considering:

  • The nature and extent of the treatment relationship between you and your doctor.
  • How well your doctor knows you.
  • The number of times your doctor has seen you.
  • Whether your doctor has obtained a detailed picture over time of your impairment.
  • Your doctor’s specialization.
  • The kinds and extent of examinations and testing performed by or ordered by your doctor.
  • The quality of your doctor’s explanation of your impairment.
  • The degree to which your doctor’s opinion is supported by relevant evidence, particularly medically acceptable clinical and laboratory diagnostic techniques.
  • How consistent your doctor’s opinion is with other evidence.

When to Ask Your Doctor for an Opinion

If your application for Social Security disability benefits has been denied and you have appealed, you should get a medical source statement (your doctor’s opinion about what you can still do) from your doctor to use as evidence at the hearing.

When is the best time to request an opinion from your doctor? Many disability attorneys wait until they have reviewed the file and the hearing is scheduled before requesting an opinion from the treating doctor. This has two advantages.

  • First, by waiting until your attorney has fully reviewed the file, he or she will be able to refine the theory of why you cannot work and will be better able to seek support for this theory from the treating doctor.
  • Second, the report will be fresh at the time of the hearing.

But this approach also has some disadvantages.

  • When there is a long time between the time your attorney first sees you and the time of the hearing, a lot of things can happen. You can improve and go back to work. Your lawyer can still seek evidence that you were disabled for a certain length of time. But then your lawyer will be asking the doctor to describe your ability to work at some time in the past, something that not all doctors are good at.
  • You might change doctors, or worse yet, stop seeing doctors altogether because your medical insurance has run out. When your attorney writes to a doctor who has not seen you recently, your attorney runs the risk that the doctor will be reluctant to complete the form. Doctors seem much more willing to provide opinions about current patients than about patients whom they have not seen for a long time.

Here is an alternative. Suggest that your attorney request your doctor to complete a medical opinion form on the day you retain your attorney. This will provide a snapshot description of your residual functional capacity (RFC) early in the case. If you improve and return to work, the description of your RFC provides a basis for showing that you were disabled for a specific period. If you change doctors, your attorney can get an opinion from the new doctor, too. If you stop seeing doctors, at least your attorney has one treating doctor opinion and can present your testimony at the hearing to establish that you have not improved.

If you continue seeing the doctor but it has been a long time since the doctor’s opinion was obtained, just before the hearing your attorney can send the doctor a copy of the form completed earlier, along with a blank form and a cover letter asking the doctor to complete a new form if your condition has changed significantly. If not, your attorney can ask the doctor to send a one-line letter that says there have been no significant changes since the date the earlier form was completed.

There are times, though, that your attorney needs to consider not requesting a report early in the case.

  • First, depending on the impairment, if you have not been disabled for twelve months, it is usually better that your attorney wait until the twelve-month duration requirement is met.
  • Second, if you just began seeing a new doctor, it is usually best to wait until the doctor is more familiar with your condition before requesting an opinion.
  • Third, if there are competing diagnoses or other diagnostic uncertainties, it is usually best that your attorney wait until the medical issues are resolved before requesting an opinion.
  • Fourth, a really difficult judgment is involved if your medical history has many ups and downs, e.g., several acute phases, perhaps including hospitalizations, followed by significant improvement. Your attorney needs to request an opinion at a time when the treating doctor will have the best longitudinal perspective on your impairment.

Medical Opinion Forms

Medical opinion forms can be great time savers for both your attorney and your doctor, but they must be used with care. Forms may not be appropriate at all in complex cases; and they need to be supplemented in many cases so that all issues are addressed. The best forms are clear and complete but not too long.