About Lymphoma | Advocacy | Art | CAM | Clinical trials | Doctors - Experts - Centers | Guidelines at Diagnosis | News
Risk Factors | Side Effects | Statistics | Support | Symptoms | Tests | Treatments | Types of Lymphoma

Search Site         Guidelines at Diagnosis | About Clinical Trials            How to Help!

Patients Against Lymphoma

 

Support > Patient-to-Patient > Patient Experiences & Guidance

Jama's Guidance on Social Security

      I must inject several thoughts after reading Sue's postings about her successful appeal for Terry's SS Disability. Sue's persistence and detailed record-keeping COMBINED with multiple medical conditions that Terry suffers from achieved an unusual victory. 

     It is more common for NHL patients to be denied benefits. The SS has a list of conditions that are A-OK for disability (including AIDS and Renal Failure) but cancers are no longer automatic. 

     The current formula is degree of disease + degree of disability + prognosis + therapy + other factors (I.e. other medical conditions) = percentage of disability.

     I have helped other patients try to get SS Disability and have seen it go both ways. I went through an appeal hearing with another NHL patient to whom benefits were denied "She can work by doing telephone sales or in-home work."  It was only when she went back on chemotherapy that she was granted SS because of her immune compromise. She had no other significant medical problems. 

     Ali, you are better to appeal your prior decision (as Sue pointed out) than to re-file. Your primary care physician is also a determining factor. If he/she feels that you should not work, then they can support your claim with a letter.

     Personally, I carried a sealed letter from Dr. Sandra Horning that said, "This patient's disease bulk and medical complications place her in a terminal category."  When I actually saw the letter, the words, I got sick at my stomach.  I already had a worker's compensation back claim disability of 33% and the Horning letter plus my local doctor's statement about low white cell counts put me in the disabled category. It was the first time I actually thought I might die from NHL. Seeing the word on paper made it very real.

     Dr. Wendy Harpham, NHL survivor, has been working to get a medical classification adopted "Post-chemo Fatigue Syndrome" and you can read about this in her book, "AFTER CANCER: A Guide To Your New Life".  Quotes from her book might give you some "meat" for your attorney. Your story mimics Wendy's very much. Both young, mother's of young children, and non-lasting remission. You would find reading her books very helpful to you. Your local library should have them.  (Wendy Schlessel Harpham, MD)  Wendy has had 3 different therapies of Rituxan post chemo over the past 8 years and each remission has been longer lasting than the previous. If you are not familiar with her, let me know and I'll get you more information.

     I have seen about 2/3 get denied among the NHL patients I have been asked to help (9). The other 1/3 are very sick in the hospital multiple times, on chemo drugs, and immune suppressed. Those three are now dead.  I just want you to be realistic in your pursuit of SS disability. If you are not permanently impaired and not currently on any therapy, I believe you will have an uphill fight on your hands. The minute you go back on any type of therapy, it becomes a downhill slide.


    Just trying to help give you both sides.

Jama Beasley


 
Disclaimer:  The information on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
Patients Against Lymphoma, Copyright 2004,  All Rights Reserved.