At a recent event in Washington, DC, South African Minister of Health and chair of the Stop TB Partnership Aaron Motsoaledi, spoke of the difficulty of lighting the fire under TB, to get the world’s attention, even as this scourge kills 1.5 million people per year, making it the second most deadly infectious disease after acute lower respiratory infections. Is it because though all are at risk of contracting TB, those who are most vulnerable belong to marginalized populations – among them, prisoners, migrants, people living with HIV/AIDS, and poor people living in crowded, unsanitary conditions?
It is as though some deaths – and lives – just don’t seem to matter much to the world. There is sadly nothing new about that. But perhaps this tragically obvious point contains the seeds of one way to begin to change that.
What if policies were to force these lives to matter by assuring that their deaths did not pass unnoticed – helping make every life count by making every death count? There is a model for this: maternal, child, and newborn mortality audits.
The World Bank describes maternal mortality audits thus:
“A maternal death audit is an in-depth systematic review of maternal deaths to delineate their underlying health social and other contributory factors, and the lessons learned from such an audit are used in making recommendations to prevent similar future deaths. It is not a process for apportioning blame or shame but exists to identify and learn lessons from the remediable factors that might save the lives of more mothers in future.”
The same approach applies to child and newborn death audits, examining each child or newborn’s death to determine its cause, with the goal of understanding how to better prevent such deaths in the future.
A basic principle behind such audits is that every life counts, so every death must be understood. No maternal, child, or newborn death should be accepted as a given – as the vast majority of these deaths, like the vast majority of TB deaths, are avoidable. It is necessary to understand the cause for each death, enabling measures to change the factors that led to that death, and thus avoid future deaths stemming from similar causes.
Such an approach seems well-tailored to the global goal of ending TB, a goal captured by one of the Sustainable Development Goal targets (“By 2030, end the epidemics of AIDS, tuberculosis, malaria and neglected tropical diseases and combat hepatitis, water-borne diseases and other communicable diseases”; ending TB is defined as reducing TB incidence to 10/100,000 population globally (page 20, n. 2). Meanwhile, there is a growing understanding of how to eliminate TB, and a movement afoot to establish Zero TB Cities. No TB death should be accepted, or taken for granted.
Perhaps, then, these maternal, child, and newborn death audits could be adapted to the TB context. As with these existing audits, the idea of TB mortality audits would be to establish a system to examine every TB death and to endeavor to understand why it happened and what could have been done to prevent it (or at least to greatly reduce the risk to similarly situated people).
There could be a number of benefits from TB mortality audits. They could:
• lead to valuable lessons on what adjustments might be needed in a country’s (or sub-national) TB strategy;
• require engagement with the community on TB through investigations into the deaths – which could in turn contribute to more community action and advocacy, as community members are forced to regularly engage with TB. The investigations could heighten the visibility of TB and perhaps have more people asking why their neighbors are dying, as they see how the deaths could have been avoided;
• lead to increased media attention, reporting on the audits, and possibly particular deaths that could and should have been prevented;
• build community expectations that no TB death should be accepted — which could in turn contribute to advocacy and build political pressure.
Hopefully TB audits could, to borrow from Dr. Motsoaledi, help light the fire.
There are well-developed tools and guides for maternal death audits, such as from the World Bank and from the International Federation of Gynecology and Obstetrics. Similar tools could be developed for TB.
TB death audits might be piloted to better understand their potential and how they would operate, including to understand the possible costs (economically and in people’s time) of such a project, perhaps initially working with highly vulnerable communities (e.g., miners) or populations (e.g., prisoners).
Such audits would hardly eliminate the need to move full steam ahead with other efforts to end TB, from rolling out new tools such as bedaquiline, a antibiotic for multi-drug resistant TB, and a new rapid test, along with continued research and development, scaling up investments, health system strengthening with particular focus on health workers, and addressing the social determinants of health and inequalities that drive TB. TB mortality audits could serve as one more pressure point for the heightened focus that TB demands.
On April 5, the O’Neill Institute, in collaboration with Fundacion InterAmericana del Corazon Argentina (FIC Argentina) and Action on Smoking and Health (ASH), participated in a hearing before the Inter-American Commission on Human Rights (the Commission) on the “Right to Health and Tobacco Addiction in the Americas”. It was the first time that the Commission considered the intersection of tobacco control, non-communicable diseases, and human rights.
Posted in Global Health, Human Rights, Non-communicable diseases, Tobacco; Tagged: children, health and human rights, human rights, industry, Inter-American Commission, marginalized populations, NCDs, regulation, right to health, tobacco, tobacco control, vulnerable population, women.
Lead exposure is a serious and widespread public health concern in the United States that has been highlighted recently through the tragedy in Flint, Michigan. Even small amounts of lead can have serious developmental effects, particularly children and pregnant women, and lead exposure can negatively affect nearly every bodily system. The CDC reports that despite the fact that there are no safe blood levels of lead there are approximately 4 million households across the country where children are being exposed to high levels of lead through their drinking water.
The Flint story should never have happened. The health dangers of lead exposure are well known and the Federal Government has a series of legislative instruments specifically designed to try and ensure accountability for the testing and treatment of drinking water. The Safe Water Drinking Act and the associated Primary Regulations are the enforceable legislative tools that require the Environmental Protection Agency (EPA) to set and enforce standards for public drinking water, outline maximum contaminant levels, treatment techniques, monitoring and reporting requirements. Under the regulations, states have delegated authority to meet a range of criteria that includes; establishing regulations at least as stringent as those recommended by the EPA, inventory the state’s public water system, conduct sanitary surveys and analyze water samples and have enforcement authority to compel water systems to comply. While the Act gives the states delegated regulatory authority, it also provides the EPA with authorization to act when agencies fail to comply and in emergency situations where there is an ‘imminent and substantial endangerment to the health of persons’.
While the story of Flint is a cautionary tale it is one that has already plagued many cities across the U.S. The city of Baltimore found elevated levels of lead in schools in 1992 and in 2007 the district changed to only using bottled water which the city considered a more cost-effective solution than replacing all lead-bearing pipes. In 2004, Washington DC faced a public health crisis when it was reported that lead-based utility lines servicing approximately 11.5 million people had levels of lead in the water exceeded EPA lead standards. In 2008, schools in Los Angeles were found to have levels of lead hundreds of times above EPA standards. Schools implemented a range of tactics to try and reduce lead exposure and in September of 2015, the district allocated $19.8 million to remove drinking fountains that were a lead threat. These are just a few examples of how widely issues of lead exposure have reached.
The failings in accountability at each level of the governmental system in Flint were highlighted in the final report of an independent task force appointed in October 2015 to investigate the cause of the crisis, assign accountability and prescribe recommendations on how to rectify the situation and prevent similar situations from occurring. The recommendations of the Flint Task Force point to the need to strengthen and empower existing authorities, especially the EPA, to ensure that required measures are clear, unambiguous and rigorously followed with clear consequences and accountability mechanisms at every level of government. Accountability measures alone will not be enough to counter the problem of a national infrastructure with approximately 7.3 million lead service lines. The EPA National Drinking Water Advisory Committee Working Group has recommended removal of all lead service lines as a public health priority, a mammoth undertaking logistically and financially. It will require investment in infrastructure, political will to enforce safety standards and a multi-sectoral commitment to address the widespread issue that runs beneath the surface of our cities and towns.
Last week, Mexican Senator Roberto Gil Zuarth, introduced a bill that would legalize cannabis, both for medical and personal use. This is only the last of a few drastic changes that Mexico has undertaken in recent months surrounding its marihuana policy. In the last six months, the Supreme Court has ruled on two cases on the issue. The first case was brought to the court by the parents of Grace, an 8 year old girl who suffers from a condition that causes severe seizures. After testing 19 different drugs, her parents sought out a drug whose main component is a derivative of cannabis, but because of the illegality of the substance they could not gain access to it. A long judicial process and media campaign led to Grace becoming the first person allowed to import and receive cannabis treatment in Mexico.
A few months after the “Grace case” a group of individuals—the Mexican Society for Responsible and Tolerant Consumption (SMART)—asked COFEPRIS (the sanitary regulatory agency) to authorize the possession, cultivation, harvesting and supply needed for the personal consumption of cannabis. It is important to note that the government legalized the personal use of cannabis in 2012 but gave no legal way to gain access to these amounts. When they were refused, they took the case all the way up to the Supreme Court. In a landmark ruling, the Court stated that the contested rules resulted in an undue restriction of the rights to personal identity, self-image, the free development of personality, self-determination and individual freedom. According to the Court, the absolute prohibition of marijuana also adversely affects the right to health. Read More
Hillary Clinton generated controversy last month when she praised Ronald and Nancy Reagan for starting a national conversation about HIV and AIDS. Clinton quickly issued a statement apologizing for her mistake about the Reagans’ record and later published an expanded response. She acknowledged not only how mistaken she was, but also made clear the real advocacy that took place during the 1980s. “To be clear, the Reagans did not start a national conversation about HIV and AIDS,” Clinton wrote. “That distinction belongs to generations of brave lesbian, gay, bisexual, and transgender people, along with straight allies, who started not just a conversation but a movement that continues to this day.”
Clinton deserves recognition for her correction and for her commitment to fighting HIV and AIDS in the United States and abroad. In fact, Clinton has recently outlined several specific plans for continuing that fight.
But Clinton’s mistake highlights a significant challenge the HIV community faces in engaging lawmakers on HIV and AIDS issues. Many members of Congress and state legislatures, for example, know very little about the historical struggles on these issues. This is especially true for Congress where both the Senate and the House of Representatives have had significant turnover since 2008.
To move the policy dialogue forward, it is important for us to know the history of HIV and AIDS and educate lawmakers about lessons learned. While the idea that Ronald and Nancy Reagan were HIV advocates is a fiction, we can draw important lessons from the Reagan Era. On June 24, 1987, Ronald Reagan issued an executive order to create the President’s Commission on the HIV Epidemic, whose members mostly comprised public health professionals as opposed to politicians responding to AIDS hysteria. This commission came too late for tens of thousands of people with AIDS who had died by that time, and its report was largely ignored by the Reagan administration.
Even so, the commission recommended a more sensible approach to certain issues than the approach adopted in later congressional enactments. HIV criminalization is a good case in point. HIV criminalization refers to the use of criminal laws to penalize alleged, perceived, or potential HIV exposure, alleged non-disclosure of a known HIV infection prior to sexual conduct, or actual HIV transmission. In its final report, the commission cautioned against using criminal laws in this way. The commission concluded that criminal laws should be used only when all other public health and civil actions fail and that criminal laws should not be a substitute for the use of public health measures. Based on these findings, the commission recommended that prior to initiating any criminal charges prosecutors engage public health officials to determine whether public health interventions would be more appropriate.
This recommendation is still relevant today. I see a great deal of value in requiring law enforcement to engage with public health officials and evaluate the appropriateness of public health interventions rather than bringing criminal charges. Such medical-legal partnerships are critical to crafting effective approaches to fighting HIV and AIDS. One promising approach is the creation of programs designed to avoid criminal charges. These programs would keep people out of prison and instead provide education about how HIV is transmitted, risk reduction counseling, triage to mental health and substance abuse services, and an emphasis on social healing.
Unfortunately, Congress encouraged states to criminalize HIV exposure without the nuance of the commission’s recommendations. The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which created the Ryan White HIV/AIDS Program in 1990, initially required every state to certify that its criminal laws were adequate to prosecute any person living with HIV who knowingly exposes another person to HIV. The requirement was removed in 2000 after all states had certified that they had such laws. These ineffective and needless HIV criminal laws are legacies of the past that have real consequences today. From 2008 to 2013 alone, at least 180 prosecutions have occurred on the basis of these laws.
Knowing this history leading to the enactment of HIV criminal laws can help us to identify potential points of advocacy. Citing the recommendations of President Reagan’s Commission on the HIV Epidemic may also be a useful starting point for conversations with Republican lawmakers. The history of HIV and AIDS is as important today as ever before.
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The views reflected in this blog are those of the individual authors and do not necessarily represent those of the O’Neill Institute for National and Global Health Law or Georgetown University. This blog is solely informational in nature, and not intended as a substitute for competent legal advice from a licensed and retained attorney in your state or country.