A colleague recently observed that we are addressing one of the most ancient diseases with approaches nearly as ancient, including over-hospitalization, use of involuntary isolation and in some countries, use of discriminatory and punitive laws which violate human rights and impede the fight against TB. Draconian laws are not the only archaic aspect of the response to TB; we are still largely fighting TB with outdated tools and medicines even though there are better, more effective ones that have been developed.
By way of background, Mycobacterium tuberculosis, the bacteria that causes TB, has plagued humanity since antiquity. TB was present in the Neolithic period (5800 BCE) and in ancient Egypt—fragments of mummies from 2400 BCE have shown signs of tuberculosis. Often a killer of characters in historical novels and films, tuberculosis, also referred to as ‘consumption,’ or ‘phthisis’ in past eras, may have killed more people than any other microbial pathogen in human history. The development of TB chemotherapy in the 1940s and 50s was significant, since for the first time TB could be effectively treated, although these medicines included major side effects including killing outer and inner hair cells which can result in hearing loss.
While many countries, particularly higher income countries, were able to significantly reduce TB incident rates by the 1980s, the AIDS epidemic has been a significant contributor to the large increase in incidents and high TB mortality that we see today. This is especially the case in developing countries who have been disproportionately impacted by HIV, particularly in contexts in which there are serious health system challenges and weaknesses.
Today, we are still largely fighting this ancient disease with older diagnostic tools and medicines; the better and more effective medicines are generally unavailable to those who need them. In fact, only 5% of people in need of newer, more effective TB medicines for drug-resistant strains have access to them. This means that people have no choice but to take older, more toxic drugs which cause deafness and psychosis and only cure 50% of people who take them. With regard to diagnostics, sputum smear microscopy is still the most common diagnostic method which only tests for pulmonary TB (not extra-pulmonary), is difficult for children to produce and does not have sufficient specificity. An additional challenge, People Living with HIV often have false negatives in TB tests because they have lower bacteria count than HIV-negative people who have TB (including microscopy and to some extent also in some nucleic acid amplification tests).
photo: MIT Review
While more rapid diagnostic tools and tools that better address gaps have been developed, such as the GeneXpert and LAM test (especially important for TB testing for People Living with HIV with low CD4 counts) these tools are not widely available in many countries and also have diagnostic deficiencies. For example, GeneXpert produces errors when exposed to dust and LAM has very low sensitivity. A significant development, the GeneXpert Ultra (next generation of GeneXpert) has improved sensitivity in TB detection for People Living with HIV and children and was endorsed by WHO in March 2017. This will be a game changer for those who have access to the tool.
In addition to the use of outdated diagnostics and medicines, in some countries public health laws, criminal laws, and treatment protocols are similarly outdated, and lack a human rights-based, participatory and patient-centered approach. For example, several countries have public health or other laws which criminalise or broadly allow for isolation, detention and quarantine in the context of infectious diseases including TB. Criminal laws may be for ‘exposure’ or similar offenses. In extreme cases, patients have been imprisoned for inability to adhere to TB treatment. Even when not TB-specific, such provisions may confer wide legal authority on health workers to involuntarily detain TB patients for long periods. Even when not enforced, provisions of this nature further stigmatise people with TB and tend to have the effect of driving people with TB and key populations underground and away from health facilities.
While there is reasonable concern over the spread of TB, particularly drug-resistant strains, ensuring meaningful access to TB prevention, diagnostics (including for drug resistance), treatment, care and support is the most effective and appropriate approach to stem the spread. Notably, once a patient is on effective treatment for two to three weeks they are typically not contagious. In general and especially in light of this, use of involuntary isolation and coercive treatment raises serious ethical and human rights issues, particularly in contexts in which there is inadequate access to drug resistance testing. For example, some countries have laws which allow for mandatory testing, treatment, hospitalisation and isolation; yet at the same time do not provide comprehensive access to rapid and effective drug-resistance testing or effective medicines for MDR-TB. Improving access to effective and quality community-based treatment, care and support and moving away from coercive and punitive approaches to TB are essential steps to modernise TB care, safeguard medical ethics and human rights, and most certainly to end TB by 2030.
photo: Biospectrum Asia
President Trump recently declared the opioid crisis a public health emergency. Advocates and physician groups say this is a first step in increasing awareness about the opioid crisis and looking at the causes of the epidemic directly, but significantly more needs to be done. The opioid crisis has impacted cities and communities across the nation, including people living with or at risk for HIV. The intersection between opioids and HIV is apparent because HIV can spread through shared needles. For example, Scott County in Indiana experienced an HIV outbreak tied to injection of opioid drugs, resulting in 181 new HIV infections from November 2014 through November 2015. Nationally, 6% of new HIV diagnoses are attributed to injection drug use alone. In addition, approximately 30% of deaths among people with AIDS are attributed to injection drug use.
The Infectious Disease Initiative at the O’Neill Institute for National and Global Health Law has expanded to address the opioid crisis and its relationship to HIV and other infectious diseases such as hepatitis C. Earlier this year, Jeffrey Crowley, Program Director of the Infectious Disease Initiative, co-authored a journal article, “Preventing HIV and Hepatitis Infections Among People Who Inject Drugs: Leveraging an Indiana Outbreak Response to Break the Impasse.” More recently, on October 23, 2017, Jeffrey Crowley participated in a congressional briefing entitled “HIV/AIDS, Viral Hepatitis and Opioids: Using Data and Mapping Technology to Understand Overlapping Epidemics at the National, State and Local Level.” Next month, as part of an event organized by amfAR on December 4, 2017, Jeffrey Crowley will participate in a roundtable discussion on using data to inform the opioid epidemic response.
Another area that we are exploring at the O’Neill Institute is the link between opioid use and HIV criminalization. HIV criminalization describes the unjust application of criminal laws to people living with HIV based solely on their HIV status. Many HIV criminal laws specifically target people living with HIV who inject drugs. Twelve states and one U.S. territory have provisions specifically criminalizing syringe sharing or sale by a person living with HIV. These laws intensify HIV stigma, and as a result, people who inject drugs may be less likely to seek testing or treatment for HIV. Thirty-two states also criminalize the possession of drug paraphernalia, including syringes. Advocates say these laws prevent people from carrying new syringes, which may cause them to share injection equipment and increase the chance that HIV hepatitis C will be spread. These laws run counter to public health best practices and do not reflect the idea that HIV and substance abuse are public health issues.
On November 30, 2017, the O’Neill Institute will host a presentation on HIV Criminalization and the Opioid Crisis in recognition of World AIDS Day. The presentation will include a discussion of HIV criminalization in the United States and its connection to drug and syringe use, before then turning to the opioid crisis and public health efforts in response to the crisis.
This blog post was co-authored by Natalie Dobek, a second-year law student at Georgetown Law and a research assistant at the O’Neill Institute.
DNA editing carries profound implications for basic science, medicine, and many other fields. Gene editing can be used for a variety of different things including research, to treat disease, and for biotechnology. Gene editing can be used to change the DNA in cells or organisms to understand their biology and how they work. Genome editing has also been used to modify human blood cells that are then put back into the body to treat conditions including certain types of cancer, such as leukemia. It can even screen unborn children for diseases before conception. It has potential for the treatment of infections including MRSA and genetic conditions such as muscular dystrophy and hemophilia. Additionally, genome editing has been u sed in agriculture to genetically modify crops to improve their yields and for resistance to disease and drought. It has also been used to genetically modify cattle.
Genome editing uses a type of enzyme called an “engineered nuclease” which cuts the genome in a specific place, thereby altering it. Afterward, the cell naturally repairs itself. Scientists are able to manipulate this repair process to make changes—or edits—to the DNA in that location in the genome. There is also the possibility of removing a section of DNA in order to prevent certain diseases or conditions such as those mentioned above.
The development of the Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) genome editing tool in 2012 has made it possible to precisely engineer cuts and/or edits in DNA at any target sequence, giving researchers unprecedented power and ease to manipulate any genome of their choosing. Scientists have already reported huge strides using CRISPR to fix disease genes in animal models and human embryos, and clinical trials for blindness, muscular dystrophy, and cancer are imminent. Scientists have also engineered the pig genome to enable safer organ transplants and are contemplating so-called gene drives to wipe out malaria.
Gene editing can be used to help treat disease but it also raises some important ethical and legal questions related to access, equity, safety, and the specter of human enhancements. Some of the ethical questions that arise have to do with creating “designer babies.” Ethicists are debating the power of CRISPR and whether it is right to allow parents to filter out traits they deem undesirable. Another issue is accessibility. While such advances in gene editing can be helpful in eradicating genetic disorders and certain diseases, the ability to edit DNA to prevent one’s child from living with chronic conditions such as Huntington’s disease will only be available to an elite class of extremely wealthy people.
However, some people believe that even with CRISPR we will not be living in a world free from genetic diseases. One of the reasons is that some important diseases are “polygenic,” meaning that more than one gene is responsible for the condition. And it can often be the case that there are hundreds of genes responsible for any one condition. One example is the case of autism. Researchers believe that as many as 1,000 genes may play a role in the development of autism, meaning there is no single gene that can be identified as “the autism gene.”
This post was written by Anita Alvin Nilert, Art Dialogues Curator, please direct any questions or comments to email@example.com.
DIALOGUES ON BEING HUMAN: The Intersections of Art, Health and Dignity with artist Wangechi Mutu in dialogue Alicia Ely Yamin, Visiting Professor at Georgetown University Law Center and Director of the Health and Human Rights Initiative.
The second in our series, the Art Dialogues seek to make health and human rights issues more visible and comprehensible. By harnessing the power of art to convey the linkages between being human, living with dignity as a subject of rights, and well-being, this series can provide space to explore inter-disciplinary forms of knowing and sharing the human experience. Too often siloed scholarship in and beyond law is limited to forms of knowledge appealing to self-defined, specialized audiences, which can preclude the intuitive reactions that reveal much about the experience of both enjoyment and violation of rights.
Selected artists share evocative artwork that was often created in response to experiences of exclusion or deprivation, or with the aim of expressing what complex human identity means to them. Bringing together these works of art and the artists who create them in one evening of intimate conversation with a leading human rights scholar, invites further reflection and inter-disciplinary dialogues, with the aim of opening people to different dimensions of questions about the meaning of being human and using rights to create social transformation that advances human dignity and well-being.
Participants will experience Wangechi Mutu’s 9 minute film,“The End of Carrying All” where she plays the main character, and later discuss the themes explored in her artwork, including ideas of desire, gender, race, cultural trauma and environmental destruction.
The film follows a woman’s journey across a landscape, carrying a large basket on her head filled to the brim, as many African women still do on a daily basis to feed their families. With every step, the woman’s basket is increasingly filling up with more goods and manufactured objects, including buildings, a bicycle wheel, a satellite dish, a tower, and an oil rig. Eventually, it feels as though the woman is carrying the burdens of all of humanity, our desires and insatiable materialism. She buckles under the weight, eventually disappearing, as this bulge too becomes re-absorbed into the earth. An eruption follows, rumbling under the earth, erasing any trace of the woman and her toil. All is quiet, and as if nothing had ever happened, the whole journey begins again. Mutu says, “My films provide a way for me to enact, represent, what I empathize and value about women. In performing, I’m present, I’m there, alive and captured in time and movement.”
Wangechi recasts female stereotypes, and questions cultural identity and perceptions. Her work touches on the complications of being, and how the physical body plays a significant role in determining experiences, survival, and the ability to understand what that is. Mutu believes, “ Art allows you to imbue the truth with a sort of magic…so it infiltrates the psyches of more people, including those who don’t believe the same things as you”.
Mutu’s collage-paintings, sculpture, installation, film work and performance works are centered on imagery of the female body underscoring how it can act as measuring devices of any society’s well being. She observes, “Females carry the marks, language and nuances of their culture more than the male. Anything that is desired or despised is always placed on the female body”.
Mutu’s work gives viewers an immediate and intimate personal insight into important themes, that words cannot express. She is one of the most widely acclaimed African-born Contemporary artists. Born in Nairobi, Kenya, she lives and works both in New York and Nairobi. Her own diverse history –she has studied both anthropology and sculpture and has also lived in Wales–has given her a unique cross-cultural perspective that informs her work. Wangechi holds an MFA from Yale, and her work has been exhibited in a host of major institutions and museums worldwide.
We are very excited to welcome Wangechi Mutu on November 8th and to collaborate across disciplines with the Art and Art History Department, and co sponsored by the School of Foreign Service and the Office of the Provost.
Wangechi Mutu, stills from The End of carrying All, 2015 –3 Screen Animated Video (color, sound) 9 minutes 27 seconds loop, Edition of 3. Courtesy of the Artist, Gladstone Gallery New York and Brussels, Susanne Vietmetter Los Angeles Projects, and Victoria Miro London.
In an era where established facts are questioned – the massive evidence on climate change and the massive dearth of evidence on voter fraud in the United States, for example – it is worth bearing in mind the following: While believing falsehoods and outright lies and not believing truths can cause great harm, skepticism is indeed warranted when, to help make sense or easily communicate a complex set of facts, we boil those facts down into a single statistic. A line attributed (though not necessarily factually) to Mark Twain captures the point well: “Facts are stubborn things, but statistics are pliable.”
Several recent controversies, findings, and articles remind us of this crucial distinction between reality and the statistics that portend to portray reality:
* Skilled birth attendants and maternal mortality: One question that we should ask about statistics is whether they are the best measure of what they are meant to tell us. A recent article raised questions over the focus on the international community – and in turn, that of many national governments – on the proportion of births attended by skilled birth attendants as the central proxy for maternal mortality, with the policy priorities this entails. Make no mistake: There is no question that skilled birth attendants are (literally) vitally important. Evidence of their impact on reducing maternal mortality is rife (and see slide 37 of this powerpoint presentation [the link may ask whether you want to open or save the file] on the strong statistical relationship between higher skilled birth attendance and lower maternal mortality, looked at globally).
But while the correlation between the two remains, it is weaker for countries with the highest levels of mortality (see slides 38-39 of the same powerpoint presentation), as the life-saving potential of skilled birth attendants is undermined by the poor functioning health systems of which they are a part. Particularly in these high-mortality settings, might some of the resources being devoted to training skilled birth attendants (midwives, for example) be spent in other ways that would have a greater effect on reducing maternal mortality (leaving aside the availability in the world of resources for both; this ought not be an either/or choice that must be made)? For example, some analysts and development workers argue that because of the hesitancy of midwives to work in rural areas, an even higher priority than training new midwives should be “to assist community health workers, ensure basic antenatal and postnatal care and even improve local transport infrastructure — to ferry emergency cases,” along with training these community health workers to assist with deliveries.
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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.