When I lost my vision in 2005 and began looking for help I found the VA system. In order to get help with blind rehabilitation I had to become a VA patient which involved a little patience. At one time all veterans were eligible for healthcare through the VA, but the load on the system required the establishment of a tiered system of care based on need, period of service, area of service, a service connection to the veteran’s health concern and other factors.
I had private insurance, so I wasn’t eligible on the basis of need, but I had been in Vietnam during a period when I would have been exposed to Agent Orange, and blindness is considered a catastrophic disability.
After about 10 months I attended the Blind Rehab facility in Augusta, Georgia, learned a lot of skills related to getting around and living and received training on a computer using an accessibility program for the blind and visually impaired. I’m writing this on a computer supplied by the VA loaded with ZoomText.
From 2006 to 2015 the rest of my healthcare consisted of annual physicals and blood pressure medication. And then during the spring or summer of 2015 I developed a lump on my leg. I had it biopsied in October and was given a return visit date two weeks later to take out stitches and go over my pathology findings. Four days later I got a call from the surgeon telling me that I had a particularly malignant form of skin cancer, and he wanted to refer me to Duke Medical Center for further evaluation and treatment.
It was a terrifying time. Having worked thirty years as a pathologist I knew the implications of the report and in November I was evaluated for spread and scheduled for surgery.
I had a wide excision of the biopsy site and a skin graft at the beginning of December, and was sent home after five days of lying in bed with a drain and suction over the graft and proceeded to recuperate.
A wide excision is, well, wide. It took about a month for the pain and swelling to begin to subside.
All seemed well until September of 2016 when I became suspicious of a couple of lumps near the previous surgery. A biopsy showed that they were cancer. There was a lot of discussion about whether these were regional spread or a skin metastasis, since they were on the other side of my leg. The implications were significant. Regional spread could be treated locally. A metastasis would require systemic treatment like chemotherapy. All of the studies showed only cancer in that area so the decision was one of either amputation or radiation.
Because of my age and the fact that I would probably not make a successful transition to a prosthetic, radiation was considered. There are immediate and long term risks to radiation. Immediate risks are of damage to blood vessels or nerves or to joints that might make amputation become necessary. A failure of the radiation would also mean an amputation. Long term risks were secondary cancers like bone cancers or another malignant skin cancer.
For most of November and December of 2016 I underwent radiation. I was fatigued, had symptoms like a bad sunburn, and my skin graft really took the insult poorly. Parts of the graft were covered by blisters like a bad subburn, but gradually, with the right treatment recovered almost completely. It has been six months since I began treatment and I go in for a check-up at the end of the month. Much of my lower leg is a dull red brown, leathery, stiff, tender and sometimes a little achy.
So, medically, I have had good care. Really good care, I would say. What’s the problem?
To get care outside of the VA system there must be an authorization. This requires a request, confirmation from the physician who will be administering the care, with an authorization number generated. I had to reapply for these every 3 months at first – because I was being followed by my surgeon and later by the radiation oncologist – and later those got extended in length. Each time I went for care at Duke they had no record of the authorization with the VA insisted on sending directly to Duke.
So, I would go to Duke, find out they knew nothing, make a call to the Non-VA Care office, get the authorization number and proceed.
Duke and the VA both have web sites where patients can keep records like their weight, blood pressure, blood sugars and the like, find out about services being offered, the results of some tests and studies, and in the VA’s case leave messages for your primary care doctor.
The other day when I logged on to my DukeMyChart site there was a message about reviewing my account. There was a bill for many tens of thousands of dollars and a place to enter your credit card number. Alternatively, I could call the Duke billing office. As it turned out, Duke had not been paid for over a year. Duke now has an office full of clerks that just work on getting reimbursed by the VA. Another four of five hours on the line with the Non-VA Care office and the Duke Billing office resulted in the billing office getting authorization numbers for past service.
Today, I got a call from Jeff in patient registration telling me that there is no authorization for my upcoming visit. My conversation with Will at the VA a few days ago left me with the impression that I am now approved for care until January 27 of 2019. Jeff was not friendly and was not willing to call anyone. He wanted me to bring my pape stating that I was authorized. Otherwise, I am responsible for the bill.
I don’t have that paper. Theoretically, Duke has it. One of the billing clerks at Duke told me that the VA sends authorizations that get routed as often as not to the wrong office. Duke clinics and offices seem to be blind to each other. When the paper arrives at the wrong office it gets folded into a paper star ship and tossed into the nearest black hole.
Both Duke and the VA are big systems that I believe do a good job of caring for people within their respective systems. The problems begin and continue, unabated, when one system tries to communicate with the other.
There are problems created by HIPPA. One institution cannot just call the other one or my privacy might be compromised. I have to be a middle man.
I don’t know why Duke isn’t getting paid. They say their requests are being denied. The VA regional reimbursement office is in Salem, Virginia. There is no one there that I know to talk with to find out why the bills are being denied; or whether they actually are being denied.
Tomorrow I will be on the phone again. Imagine what it would be like if I was sick.