In the latter years of the Reagan administration, when even sophisticated urbanites were terrified of the AIDS virus and shunned those afflicted (never mind rural blue-collar backwaters whose tolerance levels still run about 20 years behind city folk; shunning was rarely enough for them, preferring more dramatic and biblical means of expressing their distaste, like arson), when “fag bashing” was a popular pastime, tacitly tolerated if not strictly legal, a pair of doctors fresh out of their respective residencies came to Ukiah to try and do a little good. Rather than take the path of urban specialization and wealth accrual, they succumbed to the charm of Mendocino County, putting down roots and practicing at the county clinic.
It was 1986 and Dr. Marvin Trotter and his wife, Mary Newkirk, MD, were as baffled as everyone else at the time about HIV and AIDS, its transmission, provenance, and treatment. AZT, whose mitigating effects on the virus roughly paralleled those of placebos, was still a year away and the medical community stopped just short of handling the afflicted like 19th-century lepers and shipping them off to remote atolls. They can be forgiven for what today would be perceived as rank discrimination, because, as Dr. Trotter says, “We didn’t know anything. Where it came from, how to treat it, how it was transmitted…We were helpless.”
The hepatitis C virus, HIV’s less virulent but much hardier, easier to transmit, and ultimately far more widespread cousin (I should mention that HIV and HCV are dissimilar in chemical composition and morphology. HCV is a flavivirus, which I know sounds delicious but don’t eat any, and HIV is a retrovirus, and even though the retro- prefix can be found describing things worn and enjoyed by hipsters, a retrovirus is far from cool; I call it cousin because they are both bloodborne and generously represented in some of the same demographic groups) would not even be identified until 1989 when a Dr. Choo isolated from types A and B, what was then dubbed “non-A, non-B hepatitis.”
Hep C replicates and mutates at a rate well beyond the relatively sedate HIV, churning out trillions of virions with its long half-life and RNA polymerase which, oddly and unlike other RNA, does not error proofread (enabling the rapid and numerous mutations-over 50 distinct subgroups). There are more people diagnosed with Hep C than there are redheads (33% more) and some estimates put the number of undiagnosed at as least as many as are. Chalk that up to the characteristics that gave it the street name “ninja”; a silent killer, the hep C virus lies not dormant but very quiet, asymptomatic in most cases until serious liver damage has already occurred, busily spamming copies of itself into the infected liver while the unsuspecting host blithely beer-bongs his way into cirrhosis and an early death.
Another unfortunate similarity of the two viruses is their respective political baggage. Having acquired a taint deriving from their supposedly exclusive targets, a bias still operational even 30 years later made research and funding next to impossible.
While no one may have been willing to say it out loud, the fact is that the lives of homosexuals and intravenous drug users were considered less valuable, significant, and worthy of treatment. Politicians terrified of being thought sympathetic to either group voted down funding proposal after funding proposal, apparently comfortable with the decision that deferring humanitarian action which might be used against them in possible future political campaigns was preferable to saving human lives. Not until famous and/or apparently respectable people became infected did many people become disabused of the notion that AIDS was divine retribution for misspent lives. Magic Johnson, sad to say, did as much for the cause of research and treatment of HIV and AIDS than he did for basketball.
They treated the usual ailments of that rusticated locale in that bygone era —dropsy, bilious and brain fevers, puerperal exhaustion, plague, noxious humors, etc.—blissfully unaware of the part they were to play in the prevention and treatment of the two aforementioned scarlet-letter maladies. (The list of ailments in the previous sentence was for the readers who thought I might’ve stooped to straight reportage. Not bloody likely; my facts are good, but it’s still me.)
One day in 1986 a patient came into the clinic, a Mr. Kenneth Diamond of Laytonville, with a set of symptoms that pointed clearly toward a diagnosis of fungal meningitis. Problem was, as far as medical science knew at the time, the particular fungus responsible for Diamond’s meningitis took hold only in patients having had acute leukemia as children. Diamond had not, and his illness had progressed to the point of organ failure.
The treatment for fungal meningitis was a powerful antifungal called amphotericin-B, application of which would ease the pressure in the brain caused by the meningitis but also induce total kidney failure. The medical team was faced with a choice that was no choice at all, and watched helplessly as Diamond ultimately succumbed to brain herniation, an “ugly and painful” way to go, according to Dr. Trotter.
Post-mortem investigation revealed Diamond’s chronic intravenous drug use; the anomalous rogue fungus that killed him had found a fecund field in which to flower (yes, you botany buffs, I know that fungi are not angiosperms and don’t “flower,” but the alliterative impulse cannot and must not be stifled) in his neglected and unhygienic apparatus.
Instead of the knee-jerk bioethically-slanted reactions typical of many people in the medical field, both then and now—another dead junkie, he brought it on himself, etc.—Drs. Trotter and Newkirk and their team—physician’s assistant Lynn Meadows, RN Deborah Meade, several other medical professionals, and one very dedicated lay volunteer, Alan Swanson—began conceiving and implementing harm reduction principles, taking the compassionate view that addicts are victims of a disease to be treated instead of exceptions to Hippocratic principles due to an insufficiency of moral fiber.
The first known AIDS patient showed up in Mendocino County in 1987, galvanizing Dr. Trotter et al into action, establishing MCAVN: Mendocino County AIDS Volunteer Network, later to become Mendocino County Aids and Viral Hepatitis Network, with assistance from the public health budget. With a physical presence of only an answering machine in Dr. Trotter’s office, in the beginning MCAVN was just that: a network of volunteers struggling to get funding for AIDS treatment, care, and research, trying their best to care for the sick and dying in the face of an unsympathetic medical community and an openly hostile public.
When a makeshift hospice was established by the group in a rental house on Airport Park Boulevard, it was of necessity run clandestinely, with patients brought in under cover of night, curtains drawn against the sunshine and prying eyes.The threat of attack from frightened, ignorant people was very real — even in urban centers there were cases of burnt out homes and vandalized clinics. One shudders to think what a pickupload of young hooligans from Okie Flats might have done given the information that there was a house full of AIDS patients over on the Southside.
Both heartwarming and heartbreaking are the reminiscences of the principals when recalling those times, as all their tireless effort went not to saving lives but only to mitigating, in whatever ways they could, often by nothing more than just being there, the inevitable result of the HIV virus in those days.
As the disease took hold and spread, MCAVN lost an average of one client per month, which trend continued upward until AIDS research began bearing some usable fruit with the advent of new treatments and pharmacological cocktails. In 1995, the darkest time of all, “complications from AIDS” was the leading cause of death in adults 25-44 years old, and over 50,000 people succumbed in the US that year, including a couple dozen here in Mendocino.
At one point MCAVN was granted stewardship of Mendocino’s portion of the Ryan White grant, which enabled them to expand their presence, hire staff, acquire space to house and treat the destitute and uninsured among their clientele, and make quantifiable strides forward not just in ameliorating suffering but in extending and saving lives.
In 2018, though, the grant was rescinded for, as one staff member put it, “doing too much.” Federal grants are rigorously policed and inspected for compliance and adherence to standards and during one inspection there were found to be too many patients in one house where, in typical MCAVHN style, they were trying to maximize their resources by helping as many people as possible.
After the money was pulled, focus shifted to Hepatitis C (HCV), which itself was reaching epidemic proportions. While not the fearsome predator that HIV was, the HCV virus tended to decrease life expectancy in those whose infection progressed from acute to chronic (about 40%) by around ten years. The first significant inroads to successful treatment came in the late 90s with the combinatory therapy of interferon and ribovarin, which had a cure rate of about 40% after a year of treament.
Problem was, the side effects were a list of horrors that made many people opt to roll the dice with the virus rather than suffer the consequences of the treatment; fun stuff like psychosis, severe depression, suicidal urges, anaemia, insomnia, nausea, etc.
Today, though, new medications like Zeperteir, Harvoni, and Epclusa have defanged HCV entirely by achieving a 98% cure rate in 8-12 weeks with fewer and less troublesome side effects, and MCAVHN has played a significant role, perhaps the most significant, in the major reduction of both new and existing cases in the county through both their syringe exchange program and facilitating treatment for their clients.
Today, MCAVHN has evolved into a many-armed help center, assisting with behavioral health issues, homelessness, medical and dental problems, transportation, and indeed whatever life complication someone might wander in with, wondering what to do about it. The response is rarely “Sorry, but we only help with [X] here,” but usually, “Let’s see what we can do.”
There has also been a marked increase in outreach activity, due primarily to to a $107,000 grant from the Center at Sierra Health Foundation to provide focused education, harm reduction materials, overdose prevention techniques and tools (naloxone, which blocks opiod receptors and can reverse potentially fatal O.D.s if administered in time), and MAT (Medication Assisted Treatment) programs to Native American communities in remote areas of the county.
What this means in a practical sense is that one MCAVHN employee, the aptly named Keith Driver, is going from the Humboldt line to the Sonoma border and everywhere in between every week. His efforts will be the focus of Part III, A Day In The Life.