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Op-ed column: For cancer patient, wait for miracle drug was too long

Op-ed column: For cancer patient, wait for miracle drug was too long

Tiny spiders crawled all along the stems of the unruly, fragrant lilacs as they splayed out in the b
Op-ed column: For cancer patient, wait for miracle drug was too long
Paul Tong/Newscom
Photographer: Paul Tong/Newscom

Tiny spiders crawled all along the stems of the unruly, fragrant lilacs as they splayed out in the back of my vehicle, a memory of a gift from my father a few springtimes before his confinement to a wheelchair.

My father had a penchant for flowers. I thought of this as I tried to distract my brain from the reality of what the oncologist was saying as he confirmed the results of my father’s liver biopsy: primary liver cancer.

The liver is one of the body’s largest organs. It helps metabolize food and medicine absorbed from the intestines into the blood stream, produces bile to aid in the digestion of fats, and stores energy-producing glycogen (sugar).

Primary liver cancer is a relatively rare form of cancer in the United States and, in its advanced form, a diagnosis was historically a definitive and quick death sentence. The disease is curable by surgical intervention or a liver transplant, but only if the tumor is small.

FDA approval

For my father, as for almost all patients diagnosed with an advanced case, surgery or liver transplantation was not a viable option. So when the doctor announced, in his upbeat and no-punches-pulled manner, that there was an option, a so-called “miracle drug” on the recently (three months) approved Federal Drug Administration (FDA) list of cancer treatment drugs, rays of light began to break through the darkness of the knowledge that my father had a terminal illness.

The miracle drug, Nexavar, was approved by the FDA in 2005 for the treatment of advanced renal cancer. The statistics for a prolonged life of quality for patients was astounding, especially since at the time there were no other drugs to treat it. Approximately three months before my father’s diagnosis (October 2007), the FDA had also approved Nexavar for the treatment of primary liver cancer.

In layman’s terms, the drug targets and destroys only the cancerous cells within the affected organ without harming healthy cells, such as the case with radiation and/or chemotherapy. It was a revolutionary and much-needed pharmaceutical breakthrough for a particular group of cancer patients already in a state of compromised immunity.

The process of red tape and paperwork began for the life-saving drug that my father needed. My parents, living on a fixed income of Social Security and various small pensions, were advised that for $6,000 a month, my father would be given a real chance to fight this cancer. Fortunately, they were also advised of an organization that assists people who cannot afford $6,000 a month for life-saving medication. The National Organization of Rare Diseases is a not-for-profit organization that offers financial assistance to people such as my father.

So, my family began our journey. It took several weeks, due to paperwork, proof of eligibility for financial assistance, telephone calls, more paperwork, more proof of eligibility, mailing and faxing of forms, before my father’s HMO and National Organization of Rare Diseases reached an agreement. Finally, one Tuesday afternoon, a package containing a 30-day supply of the miracle drug arrived via Federal Express.

Unfortunately, the time it took for this medication to find its way to my parents’ doorstep was just too long. During these weeks, my father’s health rapidly deteriorated. His body was now rejecting food and certain fluids. He had an appointment to see the oncologist for an examination to see if he was strong enough to undergo this pharmaceutical therapy.

The day of my father’s scheduled appointment with the oncologist, my parents came to a mutual, difficult and painful decision. My father was not even strong enough to travel to the doctor’s office.

Time to decide

It was clear that it was now time for our family to accept death on my father’s terms.

For two more weeks my family would care for my father, assisting him in eating popsicles and with pain medication. No more doctors, no more trips to the emergency room. He was in control of his own destiny now.

My father died peacefully with his family and a close friend by his side. The miracle drug remained unopened in its Federal Express box, until it was donated to the oncologist with the hopes that it could save another cancer patient three weeks of excruciating anticipation.

Robin M. Penichter lives in Broadalbin. The Gazette encourages readers to submit material on local issues for the Sunday Opinion section.

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