Gabby Giffords and the Lack of Access to Aphasia Therapy

 In chitchat

I rarely watch anything on TV anymore that truly moves me. This week was an exception: The video of Gabby Giffords during the Democratic National Convention was such an inspiring and uplifting moment. I suspect almost all who read this will know Gabby’s story, a U.S. Representative from Arizona who was shot in the head back in 2011 while meeting with her constituents in a Tucson grocery store parking lot. As a result of the brain damage, Gabby was left with very severe non-fluent aphasia and dense right hemiplegia.

Although I completely agree with her message on gun control, it was the clarity and complexity of Gabby’s speech that really caught my attention. In fact, I could feel shivers down my spine and the hair of the back of my neck standing straight up. Twice more I have watched the same video and both times I felt the same reaction. I remember watching an interview with Gabby and her husband, astronaut Mark Kelly, not too far after the shooting took place. It was very apparent that Gabby’s speech output was severely limited, mostly single words and occasional short phrases. To go from that to giving such an amazing speech on national television is nothing short of amazing. You see, it wasn’t just the clarity of the speech that struck me: Where Gabby’s speech is today could only be achieved by countless hours of aphasia therapy, which I suspect was accompanied by much heartache, some very dark times, and probably much self-doubt. Yet, she persisted. What an inspiring person!

Although I suspect Gabby still has very marked aphasia, it is clear she has come a long way. For those who have aphasia and their caregivers as well as us who work with aphasia, this is important for many reasons. We know that aphasia therapy can work very well but suspect it is more likely to bear fruit if it can be administered in high doses over a long period of time. If I was a betting man, which I am, I would bet that Gabby has completed hundreds of aphasia therapy sessions. She is also fortunate in that her (primary?) speech-language pathologist, Dr. Fabi Hirsch, is an expert in aphasia therapy. As a side note, Fabi and I were PhD students in Audrey Holland’s lab at the University of Arizona at the same time. Fabi has spent much of her professional life running an aphasia center in Tucson, AZ, and I have no doubt that her work has made a big difference in the lives of many people with aphasia (Way to go, Fabi!). In any case, Gabby’s recovery reminds us, yet again, that substantial improvements in communication abilities can continue to take place even years after the initial injury.

Earlier in the week I had a long chat with Dr. Souvik Sen, a friend and collaborator who is the chair of the Neurology department in our medical school. One of the things we discussed had to do with the very high stroke rate in South Carolina and the difficulty in getting stroke survivors to come for follow-up medical examination after they are discharged from the hospital. The crux of the problem is almost entirely rooted in one cause: Poverty. According to Souvik, in spite of concerted efforts, his staff often cannot find a contact phone number or, in cases where they make contact, the person has no means of transportation to come for follow-up. Also, South Carolina is a very rural state and many patients would need to drive for hours to come back to the hospital. Undoubtedly, rurality and poverty are a bad combination for getting someone with aphasia the necessary therapy they need.

So, what does lack of access to services in South Carolina have to do with Gabby’s recovery? Although deeply touching, I suspect Gabby’s story is not unique and hope that many others have made similar improvements through countless hours of therapy. For those who have been so fortunate to experience extensive recovery through therapy, I suspect that one factor has been crucial: Family income. It is difficult to see how individuals with very limited income can afford hundreds of hours of aphasia therapy. In the United States, federally funded rehabilitation is very limited and the laws that dictate how much therapy is dispensed are completely disconnected from the science that shows that aphasia therapy works. We already know that the presence of aphasia among patients in long-term care is the strongest predictor of poor quality of life, even worse than cancer (Lam & Wodchis, 2010, Med Care)! In spite of this, most stroke survivors with aphasia, especially those who are poorer, in the United States do not get access to the services they need.

I could ramble on for several pages on how the incentives in medical care in the United States are completely misguided and how perverse it is that the bottom line has more to do with corporate profits than with saving lives and improving quality of life. I’ll spare you the choir preaching… Yet, I continually worry that the progress we have made in treating aphasia, including life participation approaches, only reaches a small proportion of the persons who actually need it. In my state, South Carolina, I am concerned that thousands of individuals with aphasia, especially those in rural areas, have a greater chance of winning the lottery than getting the kind of access to therapy that was afforded to Gabby Giffords. I have no doubts that Gabby is a beacon of hope for many people with aphasia and a great source of inspiration to one and all. She certainly is to me. How amazing would it be if all people with aphasia, regardless of income, could have greater access to therapy and opportunities to feel whole again?

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