Editor’s note: This commentary is by Steve May, who is the former national director of state affairs for the Hemophilia Federation of America and past director of Advocacy for the New England Hemophilia Federation. In addition, he is a clinical social worker and is a member of the Selectboard in Richmond, where he resides.
[D]ec. 1 is World AIDS Day. Across America and around the globe people lost to this earthly realm will be remembered by their families and friends. Their lives will be celebrated and the conditions marking their long drift from this place and time into the next will be mourned. It is likely that those aware of this occasion will stop to bear witness in some way or another. Most people will take a moment to mourn those lost to the pandemic. Some will ponder the enormity of the global loss, while others have a more personal relationship and may find their gaze settling on a single face. Regardless, the masses will not be doing what Georgia state Rep. Karen Price has done in recent weeks. In a committee hearing, Price, while reviewing AIDS funding as part of that state’s Medicaid and Medicare budgets, suggested that AIDS patients in Georgia be placed in quarantine. Be clear, these patients are not lepers, and they do not need a leper colony.
One specific group of AIDS patients stands out in light of Price’s comments: people with bleeding disorders, like hemophilia. Hemophiliacs contracted HIV through tainted blood products in the 1970s and ’80s. These men (and due to genetic factors and biology, they are almost entirely men) contracted HIV when the blood products they depend on were given to them without having been treated or screened. Made aware of the contamination, government and industry still encouraged use of tainted products for fear of creating a panic. As a result, thousands of men needlessly were exposed to and infected with HIV and, in most cases, hepatitis. These patients continue to manage their original chronic medical condition, hemophilia.
Their infections were not the result of risky sexual behaviors. Their medical conditions were the product of corporate malfeasance which through its words and deeds declared these men and their families disposable. Right or wrong, the decisions affecting these men were made by government and industry executives. They did so, making reasonably informed decisions that their choices would have dire consequences for these men and their families.
Having a rare disease means that prevalence rates are diffused across long distances. Hemophiliacs were and are scattered to the four corners of the world. People with bleeding disorders happen to be in your community, and they also happen to be in no one community in numbers large enough to represent a critical mass anywhere. As such, the true toll of their pain and suffering is scattered across time and place. When we use words like epidemic or disaster, our mind skips to large-scale casualty events. In this case the body count is sprinkled from town to town. Any given geographic place might witness a single family or two afflicted. There was no single mass casualty event. No Bhopal. No Chernobyl. Instead suffering and loss and trauma spread from family to family like a trickle … quietly and without much fanfare.
Government failed these men. Industry failed these men. Their care providers failed these men. The reason for considering Price’s comments in light of the bleeding disorders community experience with the pandemic is two-fold. Price is married to Dr. Tom Price, the former Georgia congressman and Trump’s former secretary of Health and Human Services. The entity Price ran, HHS, is home to the organs of government most complicit in the widespread failure of industry and government to safeguard the care of people with bleeding disorders during the tainted blood era. The Centers for Disease Control, the Food and Drug Administration, the Institutes of Medicine, among others, are all located inside HHS and all are complicit in this darkest of chapters in American public health history.
Together these entities failed to protect patients from infected blood. And then they were failed again when the government, made aware of the contaminated blood products, continued to permit them to be used. Industry put profits ahead of people and exerted a terrific toll. The health care system was more concerned with the possible fallout of a panic and permitted procedures to go ahead knowing that patients were coming in contact with tainted blood products. Worried about affecting the larger blood supply, they all insisted that business proceed as normal. Problem is that this is not some ordinary business transaction, people’s lives hung in the balance.
After all, these men were supposed to be dead by now. How else do you explain a financial settlement in which Congress accepted no responsibility by the federal government for the men’s medical conditions. The award from the federal government, made in the 1990s, was conditional, and required that the government be absolved of culpability for its role in the bad blood era and injuries resulting from it.
The drug manufacturers who made the blood products these men depended on, called clotting factor, never accepted responsibility for their role either. Neither did the doctors and nurses who were involved, and the health care institutions they represented all have largely ignored their role in this calamity. Arguably the bad blood era represents the single largest medical disaster in American history. In its wake thousands of families have been affected.
For the remaining survivors, numbering maybe 2,000, it is time for us to address their hepatitis. Just like the HIV which was passed to them from the tainted blood, so too was hepatitis C. Hepatitis C left untreated will result in death. Like HIV, treatment for hepatitis C has made enormous advances in recent years. These men all are in dire need of treatment. Their care should be covered by the government. It is literally the least we can do.
It is an awful thing to see friends pass, it is worse to know that an entire class of people was considered to be expendable because they share a medical profile. Their medical condition put these people in the crosshairs of the single greatest medical disaster in American history. Just as members of the bleeding disorders community live in your community, they will die in your community as well. This calamity has been accruing rising numbers — killing them softly. In total over 10,000 American men are believed to have been adversely affected by the tainted blood of a generation ago.
Without question, we are fortunate that in the year 2017 HIV has gone from being a terminal condition to a chronic one. Advances in medicine mean that one can maintain a relatively healthy lifestyle if one can afford the fistful of drugs that are necessary to fight off infection.
The gesture of compensatory payment in the ’90s by Congress was expressly made in lieu of any recognition of guilt or culpability and these patients have never received any relief for their hepatitis exposure.
As a result there is no official record to point to. No single document and no public reckoning for the Karen Prices of the world. Price’s insistence that HIV positive and AIDS patients are undesirables who need to be locked away is unforgivable. This isn’t Australia and no one needs an asylum or a penal colony because they are chronically ill. The only thing missing from her testimony was the image of the clappers from Chaucer’s “Canterbury Tales,” who would walk ahead of the infirmed and warn healthy, decent people in the villages along their path. The coincidence of Karen Price’s husband managing the organization most culpable for the inadequate response of our government a generation ago, may simply be happenstance. He was not at HHS at the time President Ronald Reagan was in the White House, but her comment was simply unconscionable. The imagery in her comment returning us all to a time where people failed by their government in such a monumental way borders on the vulgar. The connection between the Prices, the pandemic and the bleeding disorders community should be lost on no one.
