Sifting Through The Information and The Results of My Treatment
I became aware of hep C and its serious health effects during, but more significantly after, I stopped using drugs. Getting information prior to the emergence of the internet was mostly by word of mouth, and through medical journals and books. Due to the lack of easily accessible information, there was a tremendous amount of mis-information and dramatic reports that focused on the worst cases, ending in liver failure, jaundice and “certain” death.
Then and now
The nuances and possible maintenance and survival of the illness were down played and rarely discussed. At the time when I was seriously researching the disease (in the 1980-90’s), it was assumed one would have liver failure, a series of transplants, if lucky, and an early death. Of course, in that time, there was great reason for alarm. The treatment options available today were not even imagined at that time; the prognosis and treatments then were relatively grim as compared to the treatment options and care available today.
My personal situation was, in comparison to many, fairly benign. Based on biopsies, I had mild liver scarring. Despite the diagnosis, I was lucky. The blood tests confirmed that I had a milder genotype 2b that had a good chance of responding to the medication, though I did have higher levels of the virus in the liver cells than expected. It was a breath of fresh air to get diagnosed, and to finally have a discussion about the illness and options for treatment, as I had avoided and denied the possibility for decades.
Hope, for the first time
When first diagnosed, my doctor described the treatment options available, all of which had disruptive and difficult side effects, including Pegylated interferon. She recommended, and I agreed, to wait since there were several emerging treatments rumored to have increased success and less debilitating effects. Her advice proved to be excellent. She also reduced my fear and anxiety by describing in a hopeful manner, the existing treatments available and the new emerging treatments on the horizon. This was the first time I realized it was not a terminal disease, that the government was finally taking it seriously, and that pharmaceutical companies were now conducting serious research and development. My doctor, a specialist in hep C recommended I take sofosbuvir 400mg/sofosbuvir 100 mg, which became available in 2016, and was described as having modest side effects, with headache and fatigue being the most common, and a high cure rate.
My insurance provider paid the majority of the costs, averaging $1,000 per pill per day for 12 weeks, for a total of $70,000. This was a lucky change of policy, as only months before I was treated, these costs were passed on to the patient, and I would not have been able to afford it. The blood tests administered at the conclusion of treatment, and those from a follow-up 3 months after treatment, showed that my hep C RNA quantitation and RNA log were undetected, and that I no longer have Hepatitis C. The side effects, as predicted, were very tolerable, consisting of mild headaches and a slight increase in fatigue. Neither interfered with work, exercise or other daily routines or ambitions. My medical provider provided a specialty pharmacist as a counselor and monitor, to ensure the treatment went smoothly, answer any questions, and troubleshoot any problems.
The only problems that emerged were because I travel for extended periods related to my work. Often, I was to be gone for over 2 months of the 3-month treatment, and the provider’s protocol was not to dispense more than 1 month of medication. Because I was gone, I would skip some days of the course, which jeopardized the treatment. Fortunately, the pharmacist was able to convince the insurer that I should receive 2 months of medication, and I was able to continue the treatments as prescribed. All in all, the attention and support given me during treatment were quite sufficient, and well planned and administered. Today, the state of treatment and care, while far from perfect, are significantly better than a few decades ago, and for that, I’m very grateful.
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