This is part of an ongoing series that gives Bronx writers a chance to share their personal stories on the state of healthcare in America.
by David Knapp
August 12, 2018
This story does not have a happy ending yet because my insurance company is demanding prior authorization for a medication which might help me. My doctor is assiduously arguing on my behalf without success. But let me begin at the beginning.
I am very active. I run, walk, bike, do Yoga, eat healthily and, until Passover of 2010, considered myself to be very healthy. As my friends and colleagues can testify, nothing stops me. But during the holiday that year, I suddenly became very ill. I had uncontrolled rectal bleeding, diarrhea, bad cramping and sore muscles not to mention serious headache and chills. I remember suffering through the first part of the eight- day event with an uncontrollable bladder, embarrassment and pain. At the time, my family had been attending Chabad of Riverdale.
The Rabbi’s father-in -law was a very kind and seasoned physician. He diagnosed me after services one day and was concerned. He said I needed to get tested. He reviewed my symptoms, diet and suggested generally some kind of lower intestinal malady. I had not been really sick before and so this all came as a shock to me.
After the holiday I began searching for a GI. I received many referrals. I settled on a large local practice. I was diagnosed with ulcerative colitis (UC), an inflammatory bowel disease that mainly affects the lining of the large intestine (colon). This autoimmune disease has a relapsing-remitting course, which means that periods of flare-ups are followed by periods of remission. Nearly one million people suffer from this disease. At the moment, there’s no medical cure for UC. Radical surgery causes other problems. From day one, the illness was difficult for me. The appointments took forever, the costs sky rocketed and the meds. were not effective. The doctors never really listened to my complaints or had time really to help me get to where I could be.
After two years with five or six flairs and three colonoscopies, I was totally unhappy. I started having inflammation problems all over my body….ankle swells, back pain and chest muscles flares and pains. I endured weight swings, moving between a loss of 15 lbs and bloating and big weight gains.
Most important from a policy standpoint, the best medicines aren’t covered by my GHI insurance and they are very expensive. On the salary that I earn and with family obligations, I cannot afford to pay for medications that might help me more than the ones I am on. Like so many others with long-lasting conditions, I am stuck both by the illness and by the increasing financial burden it places on me: a vicious circle because anxiety increases the symptoms
I am also unhappy at the impact the UC has on my independence and mobility. During flairs I have to know where every restroom in the city is and I am terrified if I get a cramp and must use facilities in neighborhoods with no public toilet. As a community social worker who travels a great deal, I experience the toll of a disease which affects my energy level.
Our health system makes chronic health disorders difficult to treat—and because insurance doesn’t cover the optimal treatment–those with chronic diseases and without infinite financial resources, must continue to suffer unexpected flareups. One watches advertisements for miracle cures, like the one for Hepatitis C, where the course of treatment is $94,000, and one wonders, even if there is a cure for UC, will I be able to afford it?
We need big pharma to work for us, to stop spending one third of its budget on advertising, and to be able to negotiate fair and equitable prices so that all Americans can have the right to good health. We need a health system that will keep us healthy at a price we can all afford.
As healthcare economist Uwe Reinhardt argues: “The issue of universal coverage is not a matter of economics. Little more than 1 percent of GDP assigned to health could cover it all. It is a matter of soul.”
Longtime Bronx resident, David Knapp directs a program (under the auspices of the NYC Department of Aging) to assist older adults to live independently.
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