GIST Support Wiki

Social Security Disability

Social Security Disability is able to be applied for, if you can no longer work due to your GIST. Patients who are accepted to SSD will also become eligible for Medicare regardless of age after 2 years on SSD. Remember EACH case is different. Each state also has different workloads, so no one can say for sure how long any case might take to either approve or deny. You CAN apply online, but before you do so, make sure that you have ALL needed information before pushing the "send" button. You can start a claim and then sign off if you need to acquire more information and then with the code you are given, continue a claim. If they ask for more information, the quicker you get it to them, the faster they can continue the process.

Link to an excellent SSD primer by expert Frances Motley at this link on the website: Social Security Disability Many people are comfortable handling this process on their own, but if you are not, Frances has not charged for her help. Help is available!!!

Frances Motley's blog for SSD questions Frances says "I have started a blog about SSA and Medicaid. Questions can be posed and we will answer. Don't know if this will help with some of the issues that have been referred to me.... Again no charge to anyone..."


A word of Caution about Expectations for SSD Approval: It Often is Slow

NOTE that although the process may go smoothly for applicants with advanced metastatic disease that is inoperable, this is often NOT the case, and many applicants may be denied initially and need to appeal. If you do have metastatic, recurrent, or inoperable GIST, take note below of the "Compassionate Allowances" route to faster Social Security Disability.

However, ONLY when some one has significant metastatic disease demonstrated by diagnostic imaging and recorded in the medical records as "advancing disease unreposnsive to chemotherpay" will someone be approved with only a diagnosis of GIST under the Compassionate Allowance aspect of SSA/DDS. If an applicant has been treated for a substantial period of time and diagnosed with a major psychiatric condition or other MAJOR medical disease, the addition of GIST responsive to chemotherapy and its side effects will usually warrant a rapid Approval. Nonetheless, in MOST areas of the USA this will still take at least three months from the date of Application.

Therefore, apply, but do not be disappointed if the system is slow.

One example of a claim processed more quickly than usual under Compassionate Allowances SSD

Fellow GISTers,

We all know how difficult the GIST journey can be, especially if you’re battling a metastasized or recurrent condition, as I am. But this will hopefully offer some help to some fellow GISTers.

Personal financial burdens on a GIST journey can certainly be a challenge. But, what we do when working is no longer a good option, due to side-effects our meds or pain management? I needed an answer to that question. After exploring the GIST Support International website and searching the archives of the ListServ (a few emails mention this program but they are dated as well), I still needed to find an answer. Fortunately, there is help!

In October 2008, the U.S. Social Security Disability department launched Compassionate Allowances, a new program designed to quickly expedite Disability claims for 50 identified conditions; including 25 for cancers. The initial press release for the program can be found here:

“Social Security Announces Nationwide Launch of Compassionate Allowances”

Compassionate Allowances are designed to quickly get you the assistance you need, if you qualify, often within 2 weeks (the above press release states 6-7 days) once your claim is submitted. I have a friend who was able to get her brother (with a different cancer) assistance in a week. This time frame is NOT the norm and your case might not be this quick.

The list of qualifying Compassionate Allowances is found here:

Particular for us GISTers, you will find intestinal GIST listed under Small Intestine Cancer; the added condition is that your cancer be inoperable, unresectable, recurrent, or with distant metastases. Here’s the link for this specific listing:

If your GIST has spread to your liver, like mine has, you might also qualify under Liver Cancer.

There is also a category for Lage Intestine Cancer that could apply to GIST of the colon or rectum.

You will of course have to substantiate your claim, based on the aforementioned condition, with medical records. To start the process you can call Social Security directly and tell them that you need to file for a Compassionate Allowance. The main number is 1-800-772-1213. You will also need to complete a Disability report that you can do online at:

One GIST patient described his SSD application experience:

"I am on SS Disability. No lawyer approx 3 weeks to get approval. Applied online no less. You have to wait 6 months after you file to begin receiving benefits though. You are elgible for Medicare after 2 years. Your COBRA elgilibility period also doubles which could be a very good thing. The key is if you have metastatic disease. Social Security live by the "Blue Book"

See sec 13.04 and that is us. I applied on line just be sure you know all the contact info and dates on all your Doctors before starting and it will be a piece of cake. In your statement, mention mets and sec13.04 of the Blue Book. Send me an email if you have questions. I never even had to go into the office and when they called me they were very nice and concerned that I get approved quickly. Guess they thought I might pass before I received benefits. Ninth year for me and I hope to hang around as long as possible. Sure feels good to get some of my money back as I was afraid I wouldn't be able to. I cannot stress enough "Blue Book", that is their bible. The link I have attached is the 2008 version."