It depends on the severity of disability and your ability to work. Because questionable claims are not uncommon, and the SSDI Benefit budget is limited, requirement for the benefits program is specific and quite complicated, difficult to understand, and Applications are a challenge. Very few WM patients will qualify for SSDI, because this is an indolent, slow moving disease with minimal symptoms, (compared to other cancers or diseases). If you do qualify, you will most likely need an attorney to help you apply and wade through the extensive paperwork. The following information has been prepared, not for patients, but mainly for the use of an attorney in preparing an application, and it’s information you should take to your legal counselor if you pursue this route. This information was prepared by one of our members, Howard Prestwich, who is an attorney.

To qualify for Social Security Disabled Worker’s Benefits, you must:

● Have a disability that makes you unable to work at virtually any job for at least 12 months; and

● Have enough years of employment to qualify as "insured"; and

● Apply for benefits soon after you stop working.

If you have a spouse or any children, be sure to list their names on the application.

Once or if you are approved for Social Security disability benefits, you receive:

● On-going monthly benefits for yourself and your dependents; and

● Medicare coverage after 24 months of disability.

What is the definition of disability used by Social Security?

Under the Social Security Act, "disability" means "inability to engage in any substantially gainful activity by reason of any medically determinable physical or mental impairment which can be expected to result in death or has lasted or can be expected to last for a continuous period of not less than 12 months."

Social Security describes, for laypersons, the process they use in a pamphlet.

You should be familiar with the process used to determine if you are disabled. It’s a step-by-step process involving five questions. They are:

Often it is helpful to obtain the forms from Social Security and fill them out before you go in or call. These forms ask many questions about past work history. They want to know who you worked for and information about the jobs. It might be easier to have that information in hand before you apply. Make sure you emphasis how physically difficult the job actually was. Thus, when asked about the heaviest weight you lifted on a job, think of the day every year when the heavy things were lifted or moved.

Where to get help:

The National Organization of Social Security Claimants Representatives is an association of lawyers and others who specialize in representing social security disability claimants. They provide a referral service and can refer claimants to an attorney in their area that specializes in these types of cases:

National Organization of Social Security Claimants Representatives

6 Prospect Street

Midland Park, NJ 07432

800-431-2804 201-444-1415 www.NOSSCR.org email nosscr@worldnet.att.net

A more detailed presentation of Social Security Disability and Waldenstrom’s follows.

Social Security Disability, The listings and Waldenstrom's. October 26, 2001

This is a set of ideas for a lawyer representing a Waldenstrom’s patient applying for Social Security Disability. This examines the disability determination program of the Social Security Administration as it might apply to a Waldenstrom's patient. Lawyers know that Social Security Disability terminates and transfers to retirement benefits at normal full retirement

When deciding Social Security disability cases, the Commissioner uses a multi step process. The steps generally are as follows. First is the claimant engaged in substantial gainful activity? (20 C.F.R. 404.1520(b) Does the claimant have a severe impairment? (20 C.F.R. 404.1520(c)) Does or will the impairment last 12 months? Third, does the claimant's condition meet the so-called listings? (20 C.F.R. 404.1520(d) Next, can the claimant perform any of her past relevant work? Lastly, can the claimant perform any other work that exists in the national economy considering her age, education and work experience?

This paper assumes that the claimant does not work or engage in substantial gainful activity, and does have a severe impairment, and the impairment will last 12 months or more. This paper discusses Waldenstrom’s and the so-called listings. These listing are due to change in 2003.

Does the Waldenstrom's patient meet the listings? There are several listings that come into play. First the listing 7.00 Hemic and Lymphatic system dealing with chronic thrombocytopenia, anemia, coagulation defects, and Macroglobulinemia or heavy chain disease. Secondly 13.00 Neoplastic Diseases, Malignant dealing with non-Hodgkin's lymphoma.

In the following section the listings are in regular text with breaks or omissions indicated by ......, comments are italicized as are some inserted definitions which have brackets[ ].

7.00 Hemic and Lymphatic System

....

B. Chronicity is indicated by persistence of the condition for at least 3 months. The laboratory findings cited must reflect the values reported on more than one examination over that 3-month period. .....

This means present at least two blood test 3 months or more apart.

7.02. Chronic Anemia (hematocrit [definition, Percentage of the volume of a blood sample occupied by cells usually expressed as HCT] persisting at 30 percent or less due to any cause). With:

A. Requirement of one or more blood transfusions on an average of at least once every 2 months; or

B. Evaluation of the resulting impairment under criteria for the affected body system.

I think that plasmapheresis [definition, removal of whole blood from the body, separation of its cellular elements by centrifugation, and reinfusion of them suspended in saline or some other plasma substitute, thus depleting the body's own plasma without depleting its cells] is the equivalent of the blood transfusion. I would argue that if the anemia is present that the plasmapheresis is equivalent in every way and is even a more severe procedure.

If no plasmapheresis, argue that the body, system, bone marrow or blood system, is so affected that the listing is met. Look at the red blood cell (erythrocytes) count (RBC) normal 4.7-6.2 million/cu. mm, which show diminished ability to carry oxygen to tissues. Also look at hemoglobin (HGB) which measures iron in the red blood cells (normal 14-18 g/100ml). The erythrocyte indices show further information about the weight and concentration of hemoglobin in the average red blood cell. Look for reduced MCV, mean corpuscular volume; MCH, mean corpuscular hemoglobin and MCHC, mean corpuscular hemoglobin concentration.

Another point is that a claimant with a hematocrit of 30 to 36 percent can experience adverse effects including serious fatigue. If the claimant has other adverse health conditions such as coronary artery and other diseases of the cardiovascular system of pulmonary disease the combination of impairments should be considered. The heart’s pumping action moves the red cells to where oxygen is needed. The oxygenation action of impaired lungs might be too low.

A case that mentions this listing is Blancio v. Secretary, 1995 NY DC Lexis 9678.

......

7.06 Chronic thrombocytopenia [definition, A condition in which there is an abnormally small number of platelets in the circulating blood.](due to any cause), with platelet counts repeatedly below 40,000/cubic millimeter. With:

A. At least one spontaneous hemorrhage, requiring transfusion, within 5 months prior to adjudication; or

B. Intracranial bleeding within 12 months prior to adjudication.

I would argue again equivalence, that plasmapheresis is the same as a transfusion. Note that platelets are the cell like particles that are smaller than red or white blood cells and do the clotting. Further argue that retinal hemorrhage or gastrointestinal hemorrhage is included in the term hemorrhage and that retinal or other vein thrombosis is equivalent. See 7.07 Under part B, if intracrainial bleeding took place, you do not need a transfusion or plasmapheresis. I understand that an MRI of the head is the diagnostic tool to show the intracranial bleeding. But the language does not require that blood loss be the requirement for transfusion. Transfusion could be required for treatment to reduce the chance of recurrence. If the platelet count is 50,000 and there is another condition, it might be equivalent.

7.07 Hereditary telangiectasia. [definition, Dilation of the previously existing small or terminal vessels] With hemorrhage requiring transfusion at least three times during the 5 months prior to adjudication.

You need more transfusions but do not need a spontaneous hemorrhage, just a hemorrhage. What is the difference? I would argue again equivalence. Telangiectasia is a dilation of a blood vessel and this enlargement happens frequently in Waldenstrom’s, but is caused by the disease. Note that the location of the vessel is not mentioned so even those in the eye might qualify. One argument is that the telangiectasia caused by the condition is hereditary in that it reflects a genetic predisposition to the disease or in the alternative that it is otherwise equivalent. I would argue again equivalence in that plasmapheresis is the same as a transfusion. Are there nose bleeds, gastrointestinal or urinary tract bleeding? An endoscopy or cystoscopy may be necessary.

7.08 Coagulation defects (hemophilia or a similar disorder) with spontaneous hemorrhage requiring transfusion at least three times during the 5 months prior to adjudication.

You need more transfusions and a spontaneous hemorrhage. I would argue again equivalence in that plasmapheresis is a transfusion. Also argue that Waldenstrom’s is a disorder similar to hemophilia.

......

7.13 Lymphomas. Evaluate under the criteria in 13.06A.

This listing has great potential for Waldenstrom’s patient applications, as we will see.

7.14 Macroglobulinemia or heavy chain disease, confirmed by serum or urine protein electrophoresis or immunoelectrophoresis. Evaluate impairment under criteria for affected body system or under 7.02, 7.06, or 7.08.

This is the major listing and obviously refers to Waldenstrom’s and concentrates on three things mentioned in the SSA listings which are now briefly reviewed. Note also that the condition need only be confirmed by a serum (blood) or a urine test.

Anemia with hematocrit below 30 percent. Remember, hematocrit is the percent of the blood occupied by cells and that normal is 42-51%.

Platelet counts below 40,000/cubic millimeter with one spontaneous hemorrhage and plasmapheresis the equivalent to a transfusion. Platelets are the small cells used for clotting.

The other argument is that the body system, the blood system, is impaired to the condition that the listing is met. To do that, show that claimant’s anemia, thrombocytopenia, telangiectasia, and other conditions add up to a hemic system that does not function well

7.15 Chronic granulocytopenia [Less than the normal number of granular leukocytes in the blood] (due to any cause). With both A and B below:

A. Absolute neutrophil [A mature white blood cell in the granulocytic series, formed by myelopoietic tissue of the bone marrow (sometimes also in extramedullary sites), and released into the circulating blood, where they normally represent from 54% to 65% of the total number of leukocytes. ]counts repeatedly below 1,000 cells/cubic millimeter; and

B. Documented recurrent systemic bacterial infections occurring at least 3 times during the 5 months prior to adjudication.

The purpose of white blood cells is to fight infection. A count of below 4,000 cells/mm is abnormal. Often this would be because of treatment such as chemo. Look for sores in the month and sores on the skin. Perhaps the doctor can say that the claimant’s cell count will wax and wane and a low count will occur in the future, but it is difficult to say when.

13.00 Neoplastic Diseases, Malignant

......

13.06 Lymph nodes:

A. Hodgkin's disease or non-Hodgkin's lymphoma with progressive disease not controlled by prescribed therapy; or

.......

This is the interesting one as Waldenstrom’s is repeatedly referred to as a non-Hodgkin's lymphoma. It certainly is progressive. If it is controlled by treatment, then not disabled. If the condition is not controlled by treatment, then disabled. The listing does not mention a treatment. Waldenstrom’s patients, during early days of diagnoses, are put on a watch and wait, or no treatment regime. I think that arguing failure of no treatment as a prescribed therapy is bound to fail. But if the chemotherapy or related treatments fail to control within a three-month period and the IgM rises over that period, then the listing is meet.

If there is difficulty with the definition of Waldenstrom’s as a non-Hodgkin’s lymphoma cite Fridik et all, First-line treatment of Waldenstrom’s disease with Cladrabine, Annals Hematol 1997 74:7-10 .

It might be possible to ask the physician to state that the Waldenstrom’s claimant’s condition is equivalent to this listing.

Quinones v. Secretary 567 F. Supp. 188 (DC NY, 1983) mentions this listing. The claimant had Hodgkin’s Disease and low back pain. The treating doctor wrote a report that patient suffered a recurrence of Hodgkin’s Disease. His prognosis was guarded, and his outlook for cure was uncertain. These are good words for a doctor to use as in Waldenstrom’s, prognosis is almost always guarded, there is always a recurrence and there is no cure.

This ends the discussion of the listings. The above discussion should give the lawyer enough ammunition to persuade SSA that the listings are met in a worthy case. If not, go on to the next series of arguments.

The next two tests then come into play if the listings are not met.

First, can the claimant do any of the past work done in the 15 years before the disability onset date? This simple question has some complex parts to it as the job must have been "substantial gainful activity" meaning it could be even part time but the worker was on the job probably more than 30 days. Thus if the easiest, last job was as a receptionist you must show that job could not be done.

If it is shown the past jobs cannot be done, then the burden of proof shifts and SSA must show that there are some other jobs that exist in the national economy that could be done considering the age, education and physical capacity. This rule has many ramifications.

There are many symptoms commonly present in Waldenstrom’s patients to emphasize because they are incompatible with work. These are proven up by records from the medical providers, from testimony of the claimant, and from close family members and friends. These could be caused by the disease or the treatment. They are:

Fatigue or tiredness

Cardiac or cardiovascular problems

Pulmonary involvement or related ailments

Also, the frequency of medical treatments and the length of time to attend to treatments are factors to emphasize.

Another factor is the high susceptibility to infection, (bacterial, viral or fungal), a person with Waldenstrom’s condition might have. This susceptibility will fluctuate with treatment and as the cancer progresses as will the blood cell values.

Another point to make is that the condition, Waldenstrom’s, is rare and accordingly great weight should be placed on the report, hopefully favorable, of the treating doctor, who also, hopefully, is a board certified hematologist.

All of these factors are easily handled by the lawyer using other forms, and question scripts present in the general social security disability law literature such as Tom Bush’s book, Social Security Disability Practice, which has many fine forms and hints. Look also at Social Security Practice Guide 5 volumes by Matthew Bender for a discussion of the applicable listings. Volume Five section 35.14 has a brief two page discussions of Waldenstrom’s condition and the listings.

Tom Bush, "Social Security Disability Practice," wrote this about the 7.00 listing:

Impairments of the hemic (blood) and lymphatic system not of Listing level usually involve fatigue as the primary limiting symptom. These include anemia, sickle cell disease, thrombocytopenia, and polycythemia vera. These impairments require proof of fatigue by lay evidence and corroboration from the treating physician that someone can indeed have disabling fatigue with the claimant's findings. See the discussion of fatigue at §239, infra, in conjunction with the discussion of M.S.

The other impairments listed in this category, leukemia, lymphomas, hemophilia, etc., seldom present issues which need to be decided at a hearing. Benefits in such cases are usually awarded on the initial application.

Contributed by member Howard Prestwich,
                                  Attorney at Law
                                  216 W. Stephenson St
                                  Freeport, Il 61032
                                  815-233-0915
                                  Fax 232-2411

                                  Oct. 27 2001