About 18 months after my Parkinson’s diagnosis, I learned through a mutual friend that one of our US Air Force Academy track teammates, Jana had also been diagnosed with Parkinson’s disease.
Jana is also a physician and also deployed to Afghanistan the same year that I had been (at a different base). She had been diagnosed with Parkinson’s Disease the same month that I had been. To us, this seemed like more than a coincidence.
Jana had also served more than 20 years in the Air Force and and had applied for VA disability benefits and was denied. Jana is still serving part-time in the National Guard, but because she is not in an “active duty” position and she was diagnosed more than a year after leaving an active duty position, she is not eligible for VA benefits.
Jana had also appealed the VA decision just as I had done explaining what is known about the progression of the disease. We know that the disease is often progressing for 10-15 years before it is diagnosed and that Parkinson’s disease is known to be linked to exposure to toxins. It seemed obvious to us that the VA disability policy on service connection for Parkinson’s disease does not match the science.
It also seemed unlikely that two women with such similar career paths were diagnosed with young onset Parkinson’s disease at approximately the same time. The prevelance of YOPD in women is about 1 in 10000 women.
We reached out to other friends and friends of friends and found 3 others who had been cadets at USAFA while we were there who had also been diagnosed with Parkinson’s disease. Three of us are women, three are in the medical field and 2 already have deep brain stimulators. Considering the denominator for this cohort is about 5000 cadets, this is something we thought needed to be investigated further.
We were able to connect with the lead neurologist for Parkinson’s disease at the VA and discussed this with him. He said he had not been seeing a large number of post 9/11 Veterans at VA hospitals. Jana and I thought about this and we came up with 3 reasons why this might be the case.
- This cohort at the Air Force Academy was a fluke or due to some sort of exposure limited to USAFA.
- Many post 9/11 Veterans are still in the civilian workforce and have civilian health care coverage and so are not yet utilizing the VA system for their health care. The median age of male Veterans who use the VA system is 63, whereas the mean age of Post 9/11 Veterans is less than 40.
- The VA would not see Veterans who had been denied VA coverage, so perhaps there is an increased prevalence of PD among Veterans but because so many are being denied benefits, it did not come to the attention of those in the VA system who care for Veterans with Parkinsons’ disease.
Through a series of Freedom of Information Act requests we learned that over 5000 post 9/11 Veterans have applied for VA disability for Parkinson’s disease, and approximately half of those had been denied coverage.
This told us that the incidence of Parkinson’s disease in Post 9/11 Veterans could be as high as ten times higher than a non-Veteran the same age, and that thousands of these Veterans had been denied service connection for Parkinson’s disease.
Where do we go from here? We need a formal study to be completed and published investigating this. This study should also look at trends linking any increased prevelence to any exposures, locations stationed, career fields, vaccines received, deployment history, years of service among others.
Vietnam veterans with Parkinson’s disease exposed to agent orange and other toxins did not receive presumptive service connection and get access to VA disability benefits until after the Promise to Address Comprehensive Toxins (PACT) act of 2022.
The PACT act of 2022 also granted presumptive service connection to post 9/11 Veterans with more than 20 other medical conditions including mostly different types of cancers or medical conditions. There were no neurological conditions included.
VA benefits ensure that these 5000+ young Veterans with Parkinson’s disease will have access to VA healthcare and benefits that ensure that they are well cared for as the disease progresses.
Many of these Veterans will be unable to work until full retirement age and they and their families will be left to figure out how to get adequate healthcare and how to support themselves and their families.
Our Veterans and those men and women currently serving deserve to know that they will be cared for in the difficult years ahead.
I will be speaking at a National conference for VA neurologists later this month and hope to find a path to ensure these Veterans get the care they deserve in their upcoming years of need.
Click here for more information for Veterans with Parkinson’s Disease
