Case of the Month: Huntington’s Disease

I recently received a decision on a case we have worked on for some time.  My unfortunate client has Huntington’s disease.  Huntington’s is a hereditary disorder that first incapacitates and then causes death.  Some famous people have had it.  Perhaps the most famous was Woody Guthrie, the folk singer who wrote “This Land is Your Land, This Land is My Land.”  Woody’s son Arlo Guthrie is also a famous folk singer whose most famous song is “Alice’s Restaurant”.  Because Huntington’s is a hereditary disease, Arlo Guthrie has always known that he and his siblings might have it.  Since it is a horrible disease with very little treatment at present, taking a genetic test tells you you might or might not have a short life.  Arlo never wanted to know and refused to be tested.  Usually you know by your late 20’s as neurologic abnormalities start to happen.  Since he was famous in his early 20’s, everyone worried whether or not he would develop the disease.  In fact he did not, and while he would be at risk to pass it on, he himself will never have Huntington’s disease.  He still performs, particularly in the northeast.

Because it is genetic, every child in a family with this history knows there is a significant chance they will develop this horrible disease.  Many people like Arlo don’t want the genetic testing done.  Many people do not even go to their doctors when they start having symptoms.  It is not uncommon to have complete denial by people who have Huntington’s disease.  They ignore the symptoms or won’t seek treatment.  I understand why they wouldn’t want to know. 

However, the symptoms become disabling.  After 5 years of not working, you become ineligible for disability.  The law is you must prove disability while you are fully insured and fully insured requires that you have worked essentially 5 years out of the last 10 as well as having worked most of your life.  It is not uncommon to find someone who is not formally diagnosed with Huntington’s until the symptoms are so horrible that it is impossible to ignore.  Often that is years after the symptoms began though as I’ve explained, no treatment has ever been sought. 

The problem is there is a big difference between “being” disabled and “proving” disability.  People with Huntington’s are disabled but you have to prove that while one is still insured.  For some their insurance status expired before getting treatment.  If a person notices symptoms and goes to the doctor and it is diagnosed with Huntington’s, then it is pretty easy to prove when they started having symptoms and when they could officially be declared as having Huntington’s.  But if someone has become slowly incapacitated due to the disease and doesn’t want to know that this is Huntington’s but is hoping it’s something less incapacitating, they may not go to the doctor.  

This was the fact pattern of a recent case.  My client had not gone to the doctor until some 5 years after the start of the symptoms.  We always must prove disability before his insured status expired.  We had to prove it back years earlier when he was still insured which was over 7 years ago.  His current treating doctor wrote us a letter saying that in the doctor’s opinion, my client had had this disease for many years explaining the symptomatology of the disease is well known.  The sad progress of the disease is well known so it is not difficult for a doctor to say, “When I first saw the patient, it was a full-blown case of Huntington’s, so it had to have begun before, and he tells me that he started noticing this condition many years ago but did not want to discover that it was Huntington’s.”  That makes perfect sense, but the Administrative Law Judge said there is no proof of disability since my client saw no doctors when insured.

I was able to get a doctor at the Huntington’s Foundation, a great organization for people with this disease, to address this issue.  This preeminent expert noted that in his experience of handling hundreds and hundreds of these cases, the fact pattern I had described is quite common; that is, people avoid finding out as long as they can for fear that they have it.

We went to the federal district court on this case because the Administrative Law Judge said there was nothing wrong with the claimant at all when he was insured when in fact my client had a deadly disease and had symptoms of the disease for some time.  The U.S. Attorney reading the fact patterns in the letters refused to defend the case so the district court ordered a new hearing.    

The case was just granted by the same Administrative Law Judge who had denied the claim earlier.  He was quite happy to pay the case knowing how disabled my client was, explaining that he had wanted to pay the case the first time but he couldn’t think of any legal way to be able to do so. 

These are the nicest cases for us to win.  They are cases that too many lawyers and no non-lawyers would go near.  Most lawyers would never have appealed this case as there was not one speck of medical evidence while the client was insured which meant to them like the Administrative Law Judge the claimant couldn’t prove disability.  We were able to overcome that by getting top-notch experts, the leading people in the country, to explain the circumstances.

This is just one example of many cases that we will take on that most of our competition will not.  It is unbelievably rewarding when we can win one like this.  This is why we do this work.