Did you know?

The IWMF raised more than five million dollars for WM medical research

Did you know?

The IWMF raised more than 60 support groups in North America and nearly 20 others world-wide

Did you know?

The IWMF has a current worldwide membership of nearly 4,000

Did you know?

IWMF-TALK is a wonderful place to share information and learn from other survivors

Did you know?

Each year 1,500 new cases of Waldenstrom's macroglobulinemia are diagnosed in the USA

Did you know?

Volunteers at the IWMF Telephone Lifeline are waiting to share their experiences with you

Did you know?

You can order DVD recordings of past WM Educational Forums online or by mail

Did you know?

All IWMF programs and services are funded by WM survivors, caregivers, friends, and family

Financial Assistance Information

There may be some financial assistance available to you if you have WM, depending on your circumstances. The following sections provide a brief explanation of several programs that may apply; however, this list is not meant to be comprehensive, and those who are interested may need to seek professional help if they choose to apply for certain government benefits.

 

Veterans' Benefits (U.S.) »

[Updated August, 2010] Do you have Waldenstrom’s Macroglobulinemia (WM)?  Are you a Vietnam Veteran of a United States Uniformed Service?  If you answered yes to both questions, you may qualify for Department of Veterans Affairs (VA) Disability Compensation, medical care, and other benefits. However, you must apply. Even if you answered no, there may be other benefits available to you.  Similar benefits may be available to Vietnam Veterans of some other nations, such as Australia.

 

Introduction
 

 

The VA has determined that certain diseases are more prevalent among Vietnam Veterans and are presumed to be associated with exposure to Agent Orange (AO), the herbicide used to defoliate jungles in Southeast Asia during the Vietnam War. See http://www.va.gov/agentorange.


One of the diseases is non-Hodgkin’s lymphoma (NHL). The VA and the American Cancer Society (ACS) classify WM as a type of NHL. Therefore, Vietnam Veterans of a United States Uniformed Service who have WM are qualified for VA benefits, including disability compensation.
 

 

You qualify for VA disability compensation if you served in a United States Uniformed Service in Vietnam at any time, no matter how short a time, during the Vietnam War (1962-1975). You do not need to have been aware of being exposed to AO and you do not have to provide evidence of exposure.
 

If you served in any other place where you may have been exposed to AO or another herbicide or defoliant, you may also qualify, but you must provide evidence of exposure.  Locations where AO was used are at herbicide tests and storage in the U.S. and herbicide tests and storage outside the U.S. If you served in the US Navy offshore from Vietnam, you should apply.  Although the VA revised their requirements in 2002 to require that the veteran had to actually have set foot in Vietnam, and that was sustained by the US Supreme Court, the VA regulations specifically cover NHL for “service in the waters offshore, or service in other locations if the conditions of service involved duty or visitation in Vietnam.”   See http://bluewaternavy.org/NHL/nhl.htm.  If you served in Thailand, see http://bluewaternavy.org/Thailand/thaibase.htm.
 

 

If you are not qualified for VA disability compensation (for example, although you have WM, you have not served anywhere where you would have been exposed to AO), you may still qualify for a VA disability pension. The requirements for a disability pension are different than those for disability compensation.  You must be a wartime veteran with limited income and you must be unable to work or be age 65 or older.
 

 

Unlike Social Security Disability (SSDI), you are eligible for VA disability compensation even if you are able to work. If you are unable to work and under the full Social Security retirement age (65-67, depending on year of birth), you should also apply for Social Security Disability. You can receive both SSDI and VA disability compensation.
 

The Claim Process

 

There is no time limit after leaving Vietnam until being diagnosed with WM or submitting a VA claim. However, you should apply as soon as possible after you are diagnosed, even if you have not had symptoms. If you have already completed a course of treatment, you should still apply.  The effective date of a claim is usually the date the VA receives the claim, not the date symptoms began, as is usually so for SSDI.


You do not have to be treated by the VA in order to qualify for disability benefits, although the VA may require that you be examined by a VA health care provider.  However, qualifying may entitle you to free VA medical care. You also may be eligible for other VA benefits such as dental care, eyeglasses, no cost life insurance and commissary and base exchange privileges.
 

 

The disability claim process can be initiated by phoning the VA at 1-800-827-1000 or online at http://vabenefits.vba.va.gov/vonapp/main.asp. You must complete an application, which can be completed on the VA website, downloaded and printed from the VA website, or you may request the VA representative to mail one to you. Although it is not required, it is best to consult with a Veteran’s Service Officer (VSO). Many states have county VSO’s in some counties. The phone number should be available in the local phone directory or from Directory Assistance. You may also seek assistance from a veteran’s service organization, such as the Disabled American Veterans, at  http://www.dav.org. Their services are free. You should not need a lawyer for your initial application.  You should submit the application as soon as possible, because the effective date of the benefits is usually the date that the VA receives your application. There are no application fees or any other fees.
 

If your claim is denied by the VA, you should appeal.  It is best to use a VSO or an attorney.  Free legal assistance is available from the National Veteran’s Legal Assistance Program (NVLAP), http://www.nvlsp.org/
 

 

You should also apply for rating of all disabilities which may have originated or may have been aggravated by active service at any place or time. It will be necessary to consent to the VA obtaining your medical records for care from non-VA providers. Obtaining your medical records and letters yourself from treating physicians and sending them to the VA may expedite the process. It may take from several months to more than a year before you receive the approval. Benefits are usually retroactive to the date the VA received your claim.
 

The VA will determine a rating, which is expressed as a percentage of disability. The criteria for the 100% disability rating for NHL (and therefore for WM) are that the disease must be active and/or the patient must be in active treatment.  You will meet the treatment criterion if a treatment recommendation has been made, even if you have deferred or declined treatment. The compensation for the 100% rating for 2009 for a single veteran is $2,673 per month, tax free.  Additional compensation is paid if you are married and/or have minor children.
 

If the disease is not considered active or you are not in active treatment, a disability rating will still be given, although it may be at a lower level.   If the rating is 0%, there is no disability compensation.  However, this establishes that you have the service-connected disability and the rating may be upgraded if you develop symptoms, you are treated, or treatment is recommended.   However, you should claim that, since WM is currently incurable, it is always active, as evidenced by elevated IgM. 
 

 

There are additional ratings for disabilities which are the consequence of WM or its treatment, such as peripheral neuropathy, and there are additional allowances if you have dependents, including dependent parents, for other disabling conditions and for certain other circumstances including being unable to work, being housebound, or requiring aid and attendance.
 

If you retired from a US Uniformed Service, your retired pay will be reduced by the amount of your disability compensation. When you are awarded VA disability compensation, you should file amended income tax returns for the years for which your retired pay has been reduced. The IRS may limit this to the last three tax years, so you should submit your amended tax returns before the end of the year.  You should also apply to your Uniformed Service for Combat Related Special Compensation (CRSC).  See http://militarypay.defense.gov/benefits/docs/CRSC_Info_Paper_May_08.pdf and http://www.military.com/benefits/military-pay/special-pay/combat-related-special-compensation.html . It should be approved and will replace the forfeited retired pay. It is also tax free, so it will not affect your amended tax returns.
 

 

A lawsuit against the manufacturers of AO was settled out of court in 1985 with a payout to the plaintiffs. The fund was depleted by 1997. An attorney subsequently filed suit on behalf of plaintiffs who had not been able to participate in the original case. A lower court ruled against the plaintiffs.  The attorney appealed twice to the US Supreme Court.  The Supreme Court denied the last appeal.  There is no further recourse through the courts.  The only remaining possibility is legislation through the US Congress. For further information, see http://www.agentorangelaw.net.
 

This article was written by Jerry Fleming, Vietnam vet, retired military and VA Disability Compensation and CRSC recipient. [Jerry Fleming passed away in January, 2010.  He will be remember most of all for his persistence in helping WM vets receive the compensation they are entitled to.]

 

DISCLAIMER: The contents of this article are believed to be accurate at the time it was written, but are not guaranteed by the VA or the IWMF. Check with the VA the concerning your case.
 

 

Tips, Suggestions and Reminders:

 

1. Apply as soon as possible. The effective date of your benefits will probably be the date the VA receives your application, so try to get it to the VA by the end of the current month. Also apply for Social Security Disability Insurance (SSDI), if you are unable to work and you are under the full Social Security retirement eligibility age. You can receive both VA disability compensation and SSDI. Even if you do not qualify for VA disability compensation, you may qualify for a VA pension.
 

2. State that you have been diagnosed with Waldenstrom’s Macroglobulinemia, which is a type of non-Hodgkin’s lymphoma. Ask your oncologist to prepare a letter stating that you have WM and that it is a type of NHL.  The VA does not have a separate classification for WM.  NHL is one of the diseases presumed to be the result of exposure to AO in Vietnam. The VA claims analyst will probably never have heard of WM, but NHL is in their rating manual. Go to the VA web site at https://www.ebenefits.va.gov/ebenefits-portal/ebenefits.portal?_nfpb=true&_portlet.async=false&_pageLabel=ebenefits_myeb_vonapp1.  Print page 2. Highlight where it says, “Does VA recognize non-Hodgkin's lymphomas as service-connected for Vietnam veterans? Yes.” Include this with your claim. You can apply online or just print the page. See also, the VA's Fast Track Claims Processing System for Agent Orange at: https://www.fasttrack.va.gov/AOFastTrack/
 Go to the American Cancer Society’s web site page, "Waldenstrom’s macroglobulinemia”, at http://www.cancer.org/Cancer/WaldenstromMacroglobulinemia/DetailedGuide/waldenstrom-macroglobulinemia-w-m.  Highlight the statement, “Waldenstrom's macroglobulinemia is a type of non-Hodgkin's lymphoma…” Attach this to your claim.   

 

3. If you are a US Navy veteran who served offshore of Vietnam, but you did not actually set foot in Vietnam, you still qualify for VA disability benefits.  The VA may erroneously reject your claim because of policies and court decisions, referred to as Haas v. Nicholson, which require veterans with other AO related diseases to have actually set foot in Vietnam.  However, non-Hodgkin lymphoma (NHL) (and therefore WM) is covered by a different federal regulation than the other AO related diseases.  In order to avoid the VA erroneously rejecting your claim, attach to your claim a copy of the letter at http://bluewaternavy.org/NHL/gillibrand.PDF .
 

4. Submit a copy of your non-VA medical records and letters from your treating physicians. This may expedite the process. However, don’t delay submitting your claim while waiting to get them. You will have to sign a release for the VA to obtain your records. You can reduce the processing time by helping the VA get the records as soon as possible, especially if you obtain the records and submit them to the VA. Review your record to insure that they include the diagnosis of WM and the treatment recommended. If your physician uses another diagnosis, such as Lymphoplasmacytoid lymphoma or Lymphoplasmacytic lymphoma, ask him to prepare a statement that you have Waldenstrom’s Macroglobulinemia to attach to your claim.  Or you may go to http://www.thedoctorsdoctor.com/diseases/waldenstrom.htm, print the page, highlight where it says, “…this disease is best viewed as a lymphoplasmacytic lymphoma…” and attach it to your claim.


5. Attach a copy of your Certificate of Release or Discharge from Active Duty (DD Form 214) if you have it. It should have your Vietnam service and medals listed on it. Highlight wherever the word Vietnam appears. You may obtain a copy of your DD Form 214 by applying online at www.archives.gov.  Click on “Military Service Records”.  Follow the instructions. You will have to download the signature verification form, sign it, and fax it to the fax number indicated. You should receive your DD 214 within about three weeks. Do not delay submitting your VA disability claim while waiting for your DD Form 214. You may send it after submitting your claim.
 

 

6. Describe how the disease is active (IgM level, bone marrow biopsy, blood test results, and symptoms). State if you are in active treatment. Having active disease, being in active treatment, or having a treatment recommendation meets the criteria for the 100% disability rating. However, still apply even if you have not had symptoms or if you have already completed a course of treatment. You should still get a disability rating, although it may be at a lower level. Print a copy of the IWMF home page, www.iwmf.com and highlight where it states that WM is incurable. Include it with your claim. State in your claim that, since WM is incurable, it is always active.  Request that they designate your disability as Permanent and Total (P&T).  If they do, you will receive the benefits for life and you will not be required to be re-examined periodically.
 

7. Describe any consequential or residual disabilities, such as peripheral neuropathy. They may qualify for additional disability ratings and possibly additional disability compensation.
 

 

8. Claim any other disabling conditions which may have originated during or been aggravated by active service at any place or time. They do not have to be AO related. It is the burden of the VA to determine whether they are service-connected. Ratings are combined to increase the amount of disability compensation. However, the ratings are not added together directly. The VA has a complex formula for combining ratings.
 

9. Describe any other circumstances, such as those that may cause you to be unemployable, to be housebound, or to require aid and attendance. These may qualify for additional allowances. However, you do not have to have any of them in order to qualify for disability benefits.
 

 

10. List all dependents, including dependent parents. They warrant additional allowances.
 

11. Use a Veteran’s Service Officer (VSO), if available. They should be familiar with the requirements, although they probably are not familiar with WM.  But don’t delay submitting your claim awaiting an appointment. You can always submit additional information later.
 

 

12. Check with the VA every couple of months to make sure your application hasn’t gotten lost. It will take months and maybe more than a year for the VA to complete processing your claim. The disability compensation will be retroactive, probably to the date of your application. You will get one big check and then monthly checks or direct deposits.
 

13. If you are retired from a US Uniformed Service, after approval of your VA Disability claim, submit amended income tax returns for the retroactively forfeited retired pay. Attach a copy of your VA Award letter. You will receive a refund for the taxes you paid on that amount, with interest. Apply to your Uniformed Service for Combat Related Special Compensation (CRSC). It will return the portion of your retired pay which was forfeited because of the VA disability compensation and which is determined to be for combat related disabilities.  It is tax free.
 

 

14. The VA may call you back for re-examination and review of your case every few years. When they do, provide them current information to substantiate continuing your benefits. (Remember: Since WM is incurable, it is always active, even if your symptoms are in remission.)


 

Disability Issues (U.S.) »


This consists of a presentation on SS disability for lay persons and attorneys and a SS disability form for WM patients to take to their doctors.
 
Can WM Patients Qualify for Social Security Disability Insurance (SSDI) Benefits?
 
It depends on the severity of disability and your ability to work. Requirements for the benefits program are specific and quite complicated, difficult to understand, and applications are a challenge.
 
Some WM patients will qualify for SSDI. But this is an indolent, slow growing disease with minimal symptoms (compared to other cancers or diseases). If you do qualify, you might need an attorney to help you apply and wade through the extensive paperwork.
 
The following information has been prepared for patients. Later, there is information for attorneys. This information was prepared in 2010 by one of our IWMF members, Howard Prestwich, who is an attorney located at 216 W. Stephenson St., Freeport, IL 61032, phone 815-233-0915 FAX 815-232-2411 .
 
To qualify for Social Security Disabled Worker's Benefits, you must: 
* Have a disability that makes you unable to work full time at virtually any job for at least 12 months; and
* Have enough years of employment to qualify as "insured"; and
Generally the older you are the easier it is to qualify for after you are over 50 years of age the system tilts more in your favor. SSA assumes an older person is less able to do hard physical and mental work, and will be less able to learn new job skills.
 
If you are approved for Social Security Disability Benefits, you receive:

  • Ongoing monthly benefits for yourself and your qualifying dependents; and
  • Medicare coverage after 24 months of disability benefits (30 months after onset)

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."
 
For lay persons, the Social Security Administration (SSA) describes the process it uses in a pamphlet. You should be familiar with the process used to determine if you are disabled. It is a step-by-step process involving five questions. They are:
 

  1. Are you working? If you are and your gross earnings average more than $1000 (this goes up each year) a month, you generally cannot be considered disabled. It was $980 a month in 2009. Remember, there are 4.3 weeks in the average month with most having four but a few with five.
  2. Is your condition "severe?" Your impairments must interfere with basic work-related activities for your claim to be considered.
  3. Is your condition found in the list of disabling impairments? SSA maintains a list of impairments for each of the major body systems that are so severe they automatically mean you are disabled. If your condition is not on the list, SSA will have to decide if it is of equal severity to an impairment on the list. If it is, your claim is approved. If it is not, SSA goes to the next step.
  4. Can you do the work you did previously? If your condition is severe, but not at the same or equal severity as an impairment on the list, then SSA must determine if it interferes with your ability to do any work you did in the last 15 years. If it does not, your claim will be denied. If it does, your claim will be considered further.
  5. Can you do any other type of work? If you cannot do the work you did in the last 15 years, SSA then looks to see if you can do any other type of work. SSA considers your age, education, past work experience and transferable skills, and will review the job demands of occupations as determined by the Department of Labor. Generally this means can you do a sit down type job.

Often it is helpful to obtain the forms from Social Security and fill them out before you go in or call. You can apply on-line and SSA likes you to do it this way. The Web Site when this was written is: http://www.socialsecurity.gov/applyfordisability/. There is also a frequently asked questions list on that web site. These forms ask many questions about the medical treatments you received and past work history. SSA wants to know who you worked for and information about the jobs. It might be easier to have that information in hand before you apply. There are several forms to be completed. First there is an application. Then there is a report form that asks about doctors, hospital and clinics and their addresses. It also asks about jobs. Make sure you emphasize how physically difficult the job actually was. Thus, when asked about the heaviest weight you lifted on a job, think of the day 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 that specializes 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. On their web site they have a frequently asked questions section at: http://www.nosscr.org/faq.html. If you are thinking of applying you might read that first.
 
National Organization of Social Security Claimants Representatives
560 Sylvan Avenue
Englewood Cliffs, NJ 07632
800-431-2804, 201-567-4228, fax 201-567-1542
www.nosscr.org, email:
 
A more detailed presentation of Social Security Disability and WM follows.
 
Social Security Disability, The Listings, and WM (fall, 2010)
 
This is a set of ideas for a lawyer representing a WM patient applying for Social Security Disability. It examines the disability determination program of the Social Security Administration as it might apply to a WM patient and pays particular attention to the listings that might apply. Lawyers know that Social Security Disability terminates and transfers to retirement benefits at normal full retirement.
 
 Lawyers probably do not know that the symptoms of WM may include weakness, fatigue, weight loss and chronic oozing of blood from the nose and gums. Peripheral neuropathy can occur in 10% of patients. Lymphadenopathy, splenomegaly, and/or hepatomegaly are present in 30-40% of cases. Some symptoms are due to the effects of the IgM paraprotein, which may cause autoimmune phenomena or cryoglobulinemia.   Other symptoms of WM are due to the hyperviscosity syndrome, which is present in 6-20% of patients. This is attributed to the IgM monoclonal protein increasing the viscosity of the blood. Symptoms of this are mainly neurologic and can include blurring or loss of vision, headache, bleeding and (rarely) stroke or coma. Some patients have tumor related fever, chills and night sweats. Some have Raynaud’s, organ dysfunction, digestive problems, or renal failure. Further discussions of the condition are found at Treon, How I treat Waldenstrom macroglobulinimia, Blood, Sept, 2009, Vol 114, No 12, ;Arun Vijay and Morie A. Gertz, Waldenström macroglobulinemia, Blood, Jun 2007; 109: 5096 - 5103; Ansell et al, Diagnosis and Management of Waldenström Macroglobulinemia, Mayo Clinic Procedings. September 2010 85(9):824-833, published August 11, 2010, doi:10.4065/mcp.2010.0304 http://www.mayoclinicproceedings.org/article/S0025-6196%2811%2960213-9/fulltext. Attorneys will want to review the various symptoms listed in these articles often in a table form and ask WM claimants if they apply to them.
 
This paper assumes that the claimant does not work or engage in substantial gainful activity, does have a severe impairment, and that the impairment will last 12 months or more. This paper discusses WM and the so-called listings.
 
Does the WM patient meet the listings? There are several listings that come into play. The first is the listing 7.00 Hemic and Lymphatic system dealing with chronic thrombocytopenia, anemia, and coagulation defects. The second is 13.00 Neoplastic Diseases, Malignant dealing with non-Hodgkin's lymphoma and Macroglobulinemia or heavy chain disease. The third is 14.00 immune system disorders. Another listing are the Neurological listings in 11.00 because of the fatigue, nerve damage and peripheral neuropathy.   Also listing 9.08A the endocrine system, diabetes and neuropathy.
 
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 Hematological Disorders
. . .
A. Impairment caused by anemia should be evaluated according to the ability of the individual to adjust to the reduced oxygen carrying capacity of the blood. A gradual reduction in the red cell mass, even to a very low values, is often well tolerated in individuals with a health cardiovascular system. [ Those with heart, breathing, circulation or weight problems will find the effects compounded.]
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 have 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 equivalent in every way and is even a more involved, arduous severe procedure than dialysis. Also one might compare it to dialysis. Note in 6.00E4 Persistent motor or sensory neuropathy and 6.02C2 is mentioned.
 
If no plasmapheresis, argue that the body, system, bone marrow or blood system, is so affected that the listing is met or that the condition is equivalent . 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 or 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 against 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 7.06 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.
 
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 but do not need a spontaneous hemorrhage, just a hemorrhage. Would they not always be spontaneous? I would argue again equivalence. Telangiectasia is a dilation of a blood vessel and this enlargement happens frequently in WM, but is caused by the disease. Note that the location of the vessel is not mentioned so even those in the eye might qualify. This is common in Wm patients who have sausage like blood vessels in their eyes. 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.
 
7.10 Myelofibrosis (myeloproliferative syndrome). With:
A. Chronic anemia. Evaluate according to the criteria of 7.02; or
B. Documented recurrent systemic bacterial infections occurring at least 3 times during the 5 months prior to adjudication; or
C. Intractable bone pain with radiologic evidence of osteosclerosis. 
 
In this disease there is the proliferation of an abnormal type of bone marrow stem cell results in fibrosis, or the replacement of the marrow with collagenous connective tissue fibers. Many in the WM community are familiar with these symptoms. SomeWM patients have many infections such as chronic sore throats or recurrent respiratory infections brought on by their weakened immune systems. It the infections are viral or fungal argue equivalence. I include the listing for that reason.
 . . .


13.00K(3)(3) Macroglobulinemia or heavy chain disease . The diagnosis of these diseases must be confirmed by protein electrophoresis or immunoelectrophoresis. We evaluate the resulting impairment(s) under the criteria of 7.02, 7.06, 7.08, or any other affected body system...
 
This is the main listing for Wm.   Note that you must have the disease confirmed by one of two tests which measure IGM. This means you should have an elevated IGM blood test spike as the disease causes the bone marrow to produce a super abundance of that blood component that pushes out the other blood cells such as red blood cells, platelets and white cells.   But then it refers back to the blood listing in 7.02 and following.
 
13.05 Lymphomas(including mycosis fungoides, but excluding T-cell lymphoblastic lymphoma....See 13.00K1 and 13.00K2c.
 
A. Non-Hodgkin’s Lymphyoma as described in 1 0r 2:
 1. Intermediate or high-grade lymphoma persistent or recurrent following initial antineoplastic therapy. [Antineoplastics are drugs that inhibit and combat the development of cancer.]
2. Low-grade or indolent lymphoma requiring initiation of more than one antineoplastic treatment regimen within a consecutive 12-month period. Consider under a disability from at least the date of initiation of the treatment regimen that failed within 12 months.
OR
B. Hodgkin's disease with failure to achieve clinically complete remission, or recurrent disease within 12 months of completing initial antineoplastic therapy.
OR
C. With bone marrow or stem cell transplantation. Consider under a disability until at least 12 months from the date of transplantation. Thereafter, evaluate any residual impairment(s) under the criteria for the affected body system.
 
If there is difficulty with the definition of WM 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 WM claimant's condition is equivalent to one of the above listings.
 
Quinones v. Secretary 567 F. Supp. 188 (DC NY, 1983) mentions one of the above listings. 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 WM, 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 that 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 age, education and physical capacity. This rule has many ramifications.
 
There are many symptoms commonly present in WM patients to emphasize because they are incompatible with work. Make sure the doctor writes down they symptoms you have every time you visit. These symptoms are proven 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
  • Weakness
  • A tendency to bleed easily and bruise
  • Increase size of spleen or liver (discomfort, fullness)
  • Increase size of lymph nodes
  • Pain or numbness in extremities
  • Vision problems
  • Headaches and dizziness
  • Bone pain
  • Ataxia [definition, An inability to coordinate muscle activity during voluntary movements, so that smooth movements occur]

Also, the frequency of medical treatments and the length of time to attend to treatments are factors to emphasize. Many patients have monthly blood tests.
 
Another factor is the high susceptibility to infection (bacterial, viral or fungal) a person with WM 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, WM, is rare. Accordingly, great weight should be placed on the report, hopefully favorable, of the treating doctor who should be a board certified hematologist.
 
There is a Waldenstrom’s Medical Assessment Form for SS claim that is included with this material. 
 
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.  
 
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 the lay evidence and corroboration from the treating physician that someone can indeed have disabling fatigue with the claimant’s findings. See 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.
 

 

Medicare, Medicaid and Supplemental Security Income (SSI) Benefits »


Information below is adapted from information provided by the American Cancer Society (2009).  NOTE: another useful source of informtion and assitance regarding Social Security benefits in the US is: National Organization of Social Security Claimants' Representatives (NOSSCR) - http://www.nosscr.org

 

Medicare


Medicare is a federal program funded through the Social Security system. It provides health insurance for persons who meet certain criteria. Young people with cancer may receive Medicare benefits after collecting Social Security benefits, under the Supplemental Security Income program, for two years. You can get more information from the nearest Social Security Administration office (check the blue pages of your local telephone book), or by talking with the team social worker. Medicare is also federal health insurance for people who meet any of the following criteria:

  • those who are at least 65 years of age
  • those who have been permanently disabled and are receiving disability benefits from Social Security
  • those who have permanent kidney failure treated with dialysis or a transplant

Medicare is divided into parts:
Part A pays for hospital care, home health care, hospice care, and care in Medicare-certified nursing facilities. It is free.


Part B covers diagnostic studies, physicians' services, durable medical equipment used at home, and ambulance transportation. There is a cost.


Part D is optional. It helps pay for prescription drugs that are usually bought at a retail pharmacy.


HMOs that have contracts with the Medicare program must provide all hospital and medical benefits covered by Medicare. However, you must usually obtain services from the HMO network of health care providers.


Medicare provides basic health coverage, but it won’t pay all of your medical expenses. It may cover the costs of prostheses or bras, and the number covered per year may vary from state to state. Recently, Medicare has increased its coverage of the number of items for ostomy supplies used per month. If you have questions about Medicare, call 1-800-633-4227 or your local Social Security office.

Private insurance coverage that can be added to Medicare: If you are on Medicare, you may be able to add more coverage with a Medicare Supplement Insurance (commonly called Medigap) policy or a Medicare HMO sold by a private insurance company. There are 10 standard Medigap policies, each of which offers a different combination of benefits. Each is offered in all 50 states, although all plans may not be identical in all states. The plans are identified by letters A through J. It is important to compare Medigap policies because costs can vary, and some of the plans expect you to use only certain doctors or hospitals.


Medicaid


Medicaid is another government program that covers the cost of medical care. To receive Medicaid, your income and assets must be below a certain level. These levels vary from state to state. Not all health providers take Medicaid. Some examples of eligible groups for Medicaid include the following: low-income families with children, Supplemental Security Income (SSI) recipients, infants born to Medicaid-eligible pregnant women, children under age 6, and pregnant women whose income is below the family poverty level.
 

Medicare beneficiaries who have low income and limited resources may get help paying for their out-of-pocket medical expenses from their state Medicaid program. For more information, contact your state Medicaid office.


Additional Medicare/Medicaid information adapted from the National Cancer Institute (2009):


Some people may qualify for Medicare, a health insurance program for the elderly or disabled that is administered by the Centers for Medicare & Medicaid Services (CMS). Medicare may offer reimbursement for some home care services. Cancer patients who qualify for Medicare may also be eligible for coverage of home hospice services if they are accepted into a Medicare-certified hospice program. Hospice provides medical, psychological, and spiritual support for terminally ill patients. Information about Medicare services and coverage is available from the toll-free Medicare hotline at 1–800–633–4227 (1–800–MEDICARE), or by writing to 7500 Security Boulevard, Baltimore, MD 21244–1850. Deaf and hard of hearing callers with TTY equipment may call 1–877–486–2048. Medicare information can also be accessed at http://www.medicare.gov on the internet. Information about Medicare-certified home health agencies can be found on the Home Health Compare Web site, which is located at http://www.medicare.gov/HHCompare/Home.asp on the internet. This site also has general information about home health care and patients’ rights.


Medicaid, a jointly funded, Federal-State health insurance program for people who need financial assistance for medical expenses, is also coordinated by CMS. Although the Federal Government establishes general guidelines for the program, Medicaid program requirements are established by each state. Medicaid coverage includes part-time nursing care, home care aide services, and medical supplies and equipment. Information about coverage is available from local state welfare offices, state health departments, state social services agencies, or the state Medicaid office. Check the local telephone directory for the number to call. Information about specific state contacts is also available by searching the CMS.gov Contacts Database at http://www.cms.hhs.gov/apps/contacts on the internet (select State Health Departments as the Organization Type).


The Older Americans Act provides Federal funds for state and local social service programs that help frail and disabled people age 60 and older remain independent. This funding covers home care aide, personal care, meal delivery, and escort and shopping services. Older persons, their caregivers, or anyone concerned about the welfare of an older person can contact their local Area Agency on Aging (AAA) for information and referrals to services and benefits in the community. The AAAs are usually listed in the white pages of the phone book under the city or county government headings. A nationwide toll-free hotline operated by the U.S. Administration on Aging, the Eldercare Locator, provides information about AAAs and other assistance for older people. The Eldercare Locator can be reached by phone at 1–800–677–1116, or at http://www.eldercare.gov/Eldercare.NET/Public/Home/aspx on the internet.

 

Supplemental Security Income (SSI) benefits


SSI is designed to supplement the income of an eligible person or family in which there is a disabled person. The family or the person must have low income and limited assets. If you have not worked much or if your income was very low before you became unable to work, you may be eligible for Supplemental Security Income (SSI). To get SSI, your income and assets must fall below a certain level; you must be disabled, over 65, and/or blind. The amount you could get from SSI varies from state to state. If you do qualify, SSI pays you a monthly income that could be as much as $600 or more. Cost of living increases are given yearly.


Children can qualify if they meet Social Security's definition of disability. Income criteria are checked by the local Social Security Administration office and the determination of disability is made by disability evaluation specialists at the state Social Security office. Children with certain cancer diagnoses are considered disabled.


In most states, Medicaid is provided automatically to children receiving SSI. In others, a separate application must be made. You can get more information about SSI from the team social worker or from the nearest Social Security Administration office listed in the U.S. Government section of the telephone book.
 

Other Financial Information »

 

Cancer can be both an emotional and financial burden. Fortunately there are services and organizations that have the means to help lessen the financial burden for cancer patients. Should you require financial assistance, below is a list of organizations that can help. Note that from time to time, their policies may change in this regard, and the IWMF cannot control or guarantee that what is in place at any given time will remain as such for extended periods of time.

  • American Cancer Society

For your insurance issues, Health Insurance Assistance Service is a service of the American Cancer Society. They help cancer patients who have lost or are in danger of losing their health care coverage. The ACS works with the Georgetown University Health Policy Institute and connects patients with health insurance specialists who work to address patient needs. For more information, call the following number: 1-800-227-2345.

LLS has a financial assistance program to help cover costs of drug co-pays, physician visits,  and health insurance premiums. In February 2010, the organization announced an increased amount in support of up to $10,000 for WM patients. This increase is retroactive for expenses incurred since July 1, 2009. Patients enrolled in the Co-Pay Assistance Program have complete freedom to choose doctors, providers, suppliers, insurance companies, and/or treatment-related medications.  Certain income requirements must be met, and a physician must confirm the patient's diagnosis and that the drugs or physician visits for which the patient is seeking assistance are being used to treat his or her cancer. For more information, call 877-557-2672 or apply online at www.lls.org/copay.

LRF provides an extensive listing of financial assistance sources for lymphoma patients on their website in the "FInancial Assistance" page.  The listing includes government, foundation, and industry sponsored assistance.  Click here to access the listing.

  • National Coalition for Cancer Survivorship (NCCS)

Offers extensive information on health care, insurance, and employment issues and more. It’s free. Contact them at canceradvocacy.org and request information.

  • Other Assistance With Cost-Sharing and Co-Pays:

Chronic Disease Fund, 877-968-7233, www.cdfund.org

Healthwell Foundation, 800-675-8416, www.healthwellfoundation.org

Patient Access Network Foundation (PANF), 866-316-7263, www.panfoundation.org

Patient Advocate Foundation, 866-512-3861, www.patientadvocate.org

Patient Services, Inc. (PSI), 800-366-7741, www.uneedpsi.org

Patient Advocate Foundation, 866-512-3861, www.patientadvocate.org

www.rxoutreach.com – You can use RX Outreach regardless of your age or if you use another discount medicine program, have no insurance and meet financial guidelines. This is a discount drug site.

www.togetherrxaccess.com – Individuals who are not eligible for Medicare, have no prescription drug coverage, are legal residents of the US and meet financial guidelines will qualify for this discount drug service.

www.needymeds.com – This site has current information on medicine and health care assistance programs available for all diseases.

www.cancermatters.com – This site is dedicated to the needs of patients diagnosed with cancer

www.healthwellfoundation.org - committed to addressing the needs of individualsin the US with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments.

  • Leukaemia Foundation of Australia

Free accommodation for regional patients, free transport to/from treatment centres, education, support, and practical assistance.

www.leukaemia.org.au

  • Mercy Medical Airlift – Angel Flights for Cancer Patients.

Long-distance travel help for patients.

Phone: 1-800-296-1217

757-318-9174

www.mercymedical.org

  • Corporate Angel Network - Cancer Patients Fly Free on Corporate Jets

Long-distance travel help for patients.

Phone - toll free: 866-328-1313

email: 

www.corpangelnetwork.org

 

  • National Association for Home Care & Hospice (NAHC)

With so many home care organizations and services available, it is sometimes difficult to decide which to use. In addition to the local health department, information about home care services is available from organizations such as the National Association for Home Care & Hospice (NAHC). The publication How To Choose a Home Care Provider: A Consumer’s Guide can be obtained by contacting the NAHC at 228 Seventh Street, SE., Washington, DC 20003. The telephone number is 202–547–7424. The booklet can also be ordered on the NAHC’s Web site, which is located at http://www.nahc.org on the internet. An affiliate of the NAHC, the Hospice Association of America, offers publications such as All About Hospice: A Consumer’s Guide. The publications are posted at http://www.nahc.org/haa/consumerInfo.html on the internet or can be obtained by sending a self-addressed, stamped, business envelope to the NAHC address mentioned above.

 

 

Patient Gift Registry (http://www.medgift.com)

You may be familiar with various wedding gift and baby gift registries, where the "recipient" specifies what types of gifts he/she/they would like to receive.  This website was the idea of a cancer survivor who saw the need for gift registries for patients who may need support in the form of food, books, prayers, etc, but don't have sufficient resources to get those items on their own.  You can sign up/utilize the registry (or help others) at: http://www.medgift.com.