US: Journalist Todd Heywood discovers that Michigan health department have been secretly collecting HIV testing information for the past decade

Since 2003, the Michigan Department of Community Health has been secretly collecting the names, dates of birth, risk categories, and other demographic information of people submitting for confidential HIV testing at grant-funded locations throughout the state and storing them in a massive database, a months-long investigation by The American Independent has discovered.

US: President’s AIDS council calls on feds to help states repeal HIV criminalisation laws

Advisory group says these statutes are ‘unjust’ and fuel the epidemic

BY TODD HEYWOOD, AMERICAN INDEPENDENT

 

The Presidential Advisory Council on HIV/AIDS (PACHA) passed a resolution last week that calls for an end to federal and state HIV-specific criminal laws and prosecutions.

While the resolution is only advisory, it recommends that the departments of Justice and Health and Human Services issue guidance and offer incentives to state attorneys general and state health departments to eliminate HIV-specific laws. The advisory group also asks these federal agencies to develop guidelines for how to approach HIV within criminal and civil justice systems that are “consistent with the treatment of similar health and safety risks.”

As the resolution notes, 32 states and two territories have laws criminalizing people living with HIV.

In explaining the reason to repeal these laws, the resolution reads:

People living with HIV have been charged under aggravated assault, attempted murder, and even bioterrorism statutes, and they face more severe penalties because law enforcement, prosecutors, courts, and legislators continue to view and characterize people living with HIV and their bodily fluids as inherently dangerous, even as ‘deadly weapons. Punishments imposed for non-disclosure of HIV status, exposure, or HIV transmission are grossly out of proportion to the actual harm inflicted and reinforce the fear and stigma associated with HIV. Public health leaders and global policy makers agree that HIV criminalization is unjust, bad public health policy and is fueling the epidemic rather than reducing it.

PACHA is also requesting that state and federal authorities review the cases of persons convicted under such laws and overturn convictions if deemed appropriate. The group is calling on the Centers for Disease Control and Prevention to “issue a clear statement addressing the growing evidence that HIV criminalization and punishments are counterproductive and undermine current HIV testing and prevention priorities.”

“Today’s announcement is an important advancement in our collective effort to modernize unjust and discriminatory HIV criminalization laws,” said Rep. Barbara Lee (D-Calif.), co-chair of the Congressional HIV/AIDS Caucus in a statement last week. Lee introduced the REPEAL HIV Discrimination Act in 2011, which never passed, and served on the United Nations’ Global Commission on HIV and the Law.

“I join the President’s Advisory Council on AIDS in calling on the Department of Justice and the Centers of Disease Control and Prevention to issue clear guidance to states and public health departments on the counterproductive effects of HIV criminalization policies; we must end this clear discrimination against people living with HIV,” Lee continued. “Criminalization laws breed fear, discrimination, distrust and hatred, and we must end them.”

The White House declined to comment on the resolution, but the National HIV/AIDS Strategy adopted by the Obama administration in July 2010 does call for state legislatures to “consider reviewing HIV-specific criminal statutes to ensure that they are consistent with current knowledge of HIV transmission and support public health approaches to preventing and treating HIV.”

Policymakers at the state level also welcomed the resolution. Randy Mayer, chief of the Bureau of HIV, STD, and Hepatitis for the Iowa Department of Public Health, said the resolution was a new tool in advocates’ fight to repeal Iowa’s HIV-specific law.

“This resolution came at an excellent time for Iowa,” Mayer said in an email to The American Independent.

State activists and public health officials, including Mayer, have laid out a strategy to repeal the state’s law.

“The advocates in Iowa have also aligned their efforts with a public health perspective, so the resolution was a reinforcement of their justification,” Mayer said. “I think the more public health entities that weigh in on this discussion the better.”

But while policymakers praise the resolution, activists urge cautious optimism.

Sean Strub, executive director of the anti-HIV-criminalization organization Sero Project, said the resolution was appreciated, but the “real test will be in whether federal agencies and the administration responds with the necessary urgency.”

Catherine Hanssens, executive director of the Center for HIV Law and Policy, which runs the Positive Justice Project, echoed Strub’s sentiment, noting that while the resolution is important, PACHA “has no power to order anyone to do anything.”

“[HHS] Secretary [Kathleen] Sebelius and President Obama both have the discretion to ignore the resolution’s recommendations.”

Regardless, Hanssens said the resolution is an important milestone in the battle to repeal HIV criminal laws in the U.S.

“The work of advocates who pushed for passage of the resolution is not over,” she said. “But we have passed a major marker on the road to reform, and justice, for many people and communities affected by HIV.”

Nondisclosure prosecutions and population health outcomes: examining HIV testing, HIV diagnoses, and the attitudes of men who have sex with men following nondisclosure prosecution media releases in Ottawa, Canada

This study was designed to examine HIV testing, HIV diagnoses, and the attitudes of men who have sex with men following media releases about a local nondisclosure prosecution in Ottawa, Canada. The authors first reviewed the trends in HIV testing and HIV diagnoses from 2008 through 2011 in Ottawa, Canada. They went on to explore the attitudes and beliefs of local MSM about HIV, HIV prevention, HIV serostatus disclosure, nondisclosure prosecutions, and public health.

Researchers found that, statistically speaking, HIV testing and HIV diagnoses among men who have sex with men did not significantly change after the media releases about a local nondisclosure prosecution. However, qualitatively, a subgroup of 27 men who have sex with men (12 HIV-positive, 15 HIV-negative) expressed their belief that the local public health department openly shares information about people living with HIV with the police. Some HIV-positive participants stated that this perceived association between the local public health department and police services caused them to not access public health department services. The authors conclude that nondisclosure prosecutions do likely undermine HIV prevention efforts.

US: New Study Questions Michigan’s “Health Threat” Law (Press Release)

Michigan health officials are using HIV surveillance technologies to assist in enforcing a “health threat” law that makes it illegal for HIV-positive people to have sex without disclosing their status.

A new University of Michigan study reveals that health officials employ the state’s names reporting database, alongside partner services referrals, for law enforcement purposes. However, this is bad social policy for a variety of reasons, says Trevor Hoppe, the study’s author and a doctoral candidate in sociology and women’s studies.

When clients visit publicly funded health clinics in Michigan to be tested for HIV, they can expect more than just a finger prick or blood draw. Counselors also ask clients extensive questions about their sexual practices and partners. If the client tests positive for HIV or other sexually transmitted diseases, the counselor will provide treatment referrals. They are also legally mandated to ask clients to report the names of sexual partners, which health officials attempt to contact to recommend that they be tested.

Hoppe found that some health officials also ask their clients if any of their partners reported to them that they were HIV-positive. Officials then attempt to cross-reference the reported name against the state’s database of everyone in the state who has been diagnosed as HIV-positive. If an individual reported as a partner is identified by the state as HIV-positive and the client did not report that they disclosed, an investigation would be launched that could have legal ramifications.

At least 24 states have laws making it a misdemeanor or felony for HIV-positive people to have sex without first disclosing their status. In Michigan, failing to disclose is a felony punishable by up to four years in prison—whether or not the person was ever at risk of contracting the disease from their partner.

“The evidence is mounting that these laws are bad public policy and certainly bad public health policy, yet Michigan health officials are helping to enforce them,” Hoppe said.

At the minimum, there is little transparency in how health officials use epidemiological data for law enforcement purposes, he says.

“Health officials in some local jurisdictions are using data they collect for public health purposes to help enforce the law, but they’re not telling their clients how their personal information could be used,” Hoppe said.

From an ethical perspective, the question is whether it is reasonable for health officials to use confidential medical information to enforce the law.

Hoppe interviewed 25 local health officials who manage “health threat” cases from 14 jurisdictions across Michigan. His research also reveals that how local health officials interpret what qualifies as a “health threat” varies. In some cases, local officials suggested that an HIV-positive woman who became pregnant or contracted another STI might be labeled a “health threat.”

“These systems were not intended for legal surveillance, yet data collected by them are susceptible to being used for criminal proceedings,” Hoppe said.

Whether this practice should be continued must be discussed among policymakers, advocates and stakeholders, including those in the HIV-positive and –negative community, he said.

The findings appear in the February issue of the journal Social Problems.

Social Problems – Controlling Sex in the Name of Public Health (2013)

Norway: National Association of People Living with HIV responds to Norwegian Law Commission report

Yesterday was the deadline for written responses to the Norwegian Law Commission report which shocked and disappointed HIV and human rights advocates in Norway and around the world on its release last October.

After spending almost two years examining every aspect of the use of the criminal law to punish and regulate people with communicable diseases (with a specific focus on HIV) the Commission recommended that Norway continues to essentially criminalise all unprotected sex by people living with HIV regardless of the actual risk of HIV exposure and regardless of whether or not there was intent to harm.  The only defence written into the new draft law is for the HIV-negative partner to give full and informed consent to unprotected sex that is witnessed by a healthcare professional.

Since then, Professor Matthew Weait has published Some Reflections on Norway’s Law Commission Report on Criminal Law and the Transmission of Disease on his blog highlighting some of problems with the arguments used in the report.

We have also published an interview with Kim Fangen, the only member of the Commission to vote against the use of a specific law to control and punish people with HIV and other sexually transmitted infections, which presented an alternative vision.

Today, we publish the English translation of the written response by Nye Pluss, the Norwegian national association of people living with HIV.

The organisation found that, overall, the report has three key weaknesses:

• It does not take into account the formidable global challenges related to HIV and AIDS and is not consistent with the international responsibilities that Norway has to follow-up recommendations that have come from a variety of organisations, including UNAIDS.

• It does not take into account the medical advances that have taken place in the HIV field over the past few years., in particular that HIV treatment is, in fact, now prevention, and that testing and treatment (“treatment as prevention”) is one of the most important preventive measures to combat the global HIV epidemic.

• It does not acknowledge that HIV criminalisation will help to prevent effective contact tracing and counselling, and thus influence the HIV response in the wrong direction. A desire for the use of punishment is, therefore, at the expense of public health.

Nye Pluss recommends that the Government and Parliament reject the choice of the majority’s conclusions in this area and remove the particular provisions of the Criminal Code.

The HIV Justice Network fully supports their arguments and conclusions and hopes that Norways parliamentarians follow the lead of Labour’s Håkon Haugli and The Conservative Party’s Bent Høie who came out against any specific law last July.

Below is the English translation of the Nye Pluss response, shortened and paraphrased in some areas, but with their full agreement and permission.  The original Norwegian version can be read here.

Nye Pluss’s board has read and discussed the Norwegian report. Our perspective is that, as people living with HIV, all aspects of Norwegian HIV policies, including any special penal provision, must have the net result of fewer new infections. Our primary perspective is therefore one of public health.

We have found that, overall, this report has three key weaknesses:

• It does not take into account the formidable global challenges related to HIV and AIDS and is not consistent with the international responsibilities that Norway has to follow-up recommendations that have come from a variety of organisations, including UNAIDS.

• It does not take into account the medical advances that have taken place in the HIV field over the past few years., in particular that HIV treatment is, in fact, now prevention, and that testing and treatment (“treatment as prevention”) is one of the most important preventive measures to combat the global HIV epidemic.

• It does not acknowledge that HIV criminalisation will help to prevent effective contact tracing and counselling, and thus influence the HIV response in the wrong direction. A desire for the use of punishment is, therefore, at the expense of public health.

Below, we elaborate our views on these three objections.

Norway’s international responsibility in the fight against HIV

The fight against HIV and AIDS is one of the biggest challenges we face in the world: two million die every year due to AIDS-related illnesses. Around 35 million people live with HIV globally. Nearly three million are newly infected with HIV each year. Norwegian authorities have a responsibility to contribute to the international HIV response. We therefore believe that the discussion on penalising HIV exposure or transmission in Norway must be seen in relation to  the international challenges we face. This report does not live up to those challenges.

At page 184 the report states:

“UNAIDS ‘work is global, but is mainly aimed at countries where the prevalence of HIV and AIDS is high. UNAIDS has no European office, such as WHO and recommendations etc. have a global objectives and are hardly suitable for Scandinavian or European conditions. The committee’s review will be largely based on our cultural context, which can be very different from the global.”

It therefore concludes that UNAIDS’ work and recommendations specifically relating to criminal laws are not relevant for Norway, while Norwegian authorities support UNAIDS efforts globally. This is, in our opinion, a somewhat arrogant and culturally discriminatory attitude to the situation in other countries. Although Norwegian law is only applicable in Norway, we expect that Norwegian laws at home should also follow, and are not contrary to, the beliefs and policies that we export to other countries in the world.

“Treatment as prevention” – a medical breakthrough in the fight against HIV

A medical breakthrough took place when the first effective HIV medicines appeared in 1996. In countries where there was good access to these medicines, the number of AIDS-related deaths fell quickly and drastically.  Treatment as prevention is, perhaps, just as big a breakthrough – we now know that effective HIV medication prevents new HIV infections. New research shows that the risk of infection is reduced by 96%, more than any other prevention method.

[Several paragraphs discuss international policy relating to ‘treatment as prevention’….]

Nye Pluss notes with surprise that the report only once refers to “treatment as prevention” and even then in a way that gives the impression that the authors of this section have not acquired up-to-date knowledge of the issue. It is regrettable that such an important resource which claims to provide a basis for Parliament to examine Norwegian HIV policy in a holistic context – not least relating to the criminal law – treats such an important part of international HIV policy so superficially. We believe that it is a serious academic failure not to discuss the effects of punitive sanctions on earlier testing and treatment.

Criminal law regulation of serious infectious diseases – an obstacle in the fight against HIV

HIV criminalisation has been a growing problem in many countries around the world in recent years. Criminalisation helps to maintain stigma and prevent openness about HIV, and is thus an unwanted obstacle in HIV treatment and prevention. In addition, HIV criminalisation in many countries works to suppress women and minority groups that are particularly vulnerable to HIV.

Nye Pluss believes that the criminalisation of HIV exposure and transmission has been a barrier to effective HIV prevention in Norway. In some groups, annual HIV figures have tripled over the last ten years, compared with the previous decade.

A future, efficient Norwegian HIV policy will depend on effective and efficient testing, counselling, contact tracing and treatment, such as a “treatment as prevention” strategy. Effective testing of affected populations, effective tracing of possible infected sexual partners and effective treatment is, along with condoms and awareness, cornerstones of reducing new infections in Norway.

For those of us living with HIV, it is important that a future Norwegian strategy is successful, so that fewer people acquire HIV in Norway….One such major obstacle to achieve reduced infection figures is the criminalisation of HIV through a special provision in the Criminal Code, as advocated by the majority of the committee behind the report.

In the pharmaceutical industry….the manufacturer must show that the drug’s harmful effects do not exceed its positive effects… Surely it is possible that an HIV law will negatively impact vulnerable groups of people with HIV who have immigrated from countries with non-democratic regimes, who are more likely to go underground if there are threats of punitive sanctions, so that testing, disclosure, contact tracing, treatment and counselling is not available to them? Nye Pluss consider it obvious that there exists such a legitimate doubt and that this is precisely one of the reasons that some MPs have requested a separate investigation of the criminal law as it relates to HIV. “It is therefore surprising that the majority of the commission’s members argue, without any scientific evidence, that there would be no negative impact to an HIV law.”

Moreover, many members of the committee suggest that “decriminalization could be perceived as a signal that infecting others or exposing others to infection, is no longer a serious matter”(page 248). This is an unscientific, tautological statement based on the completely undocumented assumption that because HIV exposure and transmission is criminalised in Norway it has worked as a prevention tool, and that decriminalising it would lead to more infections, despite a lack of any evidence supporting this.

Nye Pluss believes the committee majority here are completely wrong, and we can refer to international research studies that support this.

[A summary of studies from Canada (O’Byrne, 2012), the US (Sero, 2012), Scotland (Bird and Leigh-Brown, 2001), and England (Whitlock, Warwick et al, 2010) showing a negative impact of HIV criminalisation follows.]

Nye Pluss finds it surprising that the majority of the Committee does not seem to be familiar with the research that has been done in recent years which shows that HIV criminalisation has unique negative impacts on willingness to test, to disclose to sexual partners, and in the creation of uncertainty amongst health care workers and counsellors. This somewhat surprising rejection of the existence of such research and thus a lack of discussion of such readily available research, weakens, in Nye Pluss’s perception, a range of the majority’s conclusions on the importance of the criminal law’s impact on public health: not to discuss the importance of documented research in this area is a serious mistake and results in the majority’s conclusions on public health failing in crucial ways.

Another key point of the debate around a penalty provision for people with HIV is the growth we have seen in HIV figures among particularly vulnerable groups, such as men who have sex with men, over the last ten years…The extremely serious issue that is raised is whether the relatively large number of prosecutions over the past decade has affected HIV testing behaviour, thus increasing the number of untreated individuals, resulting in more new infections.

It is a serious public health issue when there is a tripling of HIV infection among men who have sex with men for the last ten years in Norway. We are in absolutely no doubt that public health has not benefitted from the use of the Penal Code, and are of the opinion that the studies and analyses conducted to date, and as mentioned above, show with great clarity that the increased number of criminal trials over the last decade have impacted Norwegian society and public health in an extremely negative way. Nye Pluss cannot see that the Criminal Code’s provisions against HIV, which the majority recommend, will result in fewer HIV cases.

Nye Pluss believes that the latest scientific advances pertaining to HIV treatment and prevention will do perfectly well by themselves without assistance from the criminal law, including those few cases where restrictive measures for infection control law would be needed against an individual.

Conclusions

Nye Pluss believes that the Committee’s recommendations to maintain the criminal regulation of HIV exposure and transmission and other general dangerous diseases, would undermine Norway’s international responsibility to participate in a common front to combat HIV in the world.

We must recognise that since 100% safe sex is not possible it would be impractical to allow the courts to put a specific limit on what is punishable in a world where sex is a universal activity for the continuation of humanity … To punish a select few who have not mastered ‘safer sex’ – defined narrowly as condom use – is neither a fair or an effective tool in this fight, but rather the opposite.

No matter where you draw the line regarding what is, or is not, a criminal offense, a specific penal code criminalising HIV exposure and transmission will prevent effective prevention, early testing, contact tracing, treatment and counselling, and will put a spoke in the wheels of the “treatment as prevention” strategy that promises to be the breakthrough in the fight against HIV. That the criminal law should be both an obstacle to international responsibility and to effective measures for domestic public health in this area is unacceptable for society.

Nye Pluss recommends that the Government and Parliament reject the choice of the majority’s conclusions in this area and remove the particular provisions of the Criminal Code.

Botswana: Proposed Public Health Bill goes against HIV programming best practice

Guest blog by Christine Stegling, Associate Director, Best Practice, and Senior Human Rights Adviser, International HIV/AIDS Alliance.

Reposted with permission from the International HIV/AIDS Alliance.

Late last week, and by all accounts with no previous public debate or discussion with relevant civil society representatives, a new public health bill was debated in Botswana’s parliament that surprised and shocked many activists. According to the Alliance’s Linking Organisation in the country, Botswana Network on Ethics, Law and HIV/AIDS (BONELA), this bill did not pass through the prescribed channels of consultation which would allow those most affected, such as people living with HIV and medical practitioners, to fully understand the rationale for the bill and to participate in shaping any kind of law reform.

The bill makes provisions that go against all better knowledge of a best practice approach to HIV programming based on the respect of human rights and leading to positive public health outcomes for all. For example it provides for non-consensual HIV testing, HIV testing without the knowledge of the patient and the possibility for doctors and dentists to require an HIV test before undergoing medical or dental procedures.  It also proposes that people living with HIV inform any sexual partner or care givers of their status, regardless of the actual risk of transmission.

While some of the latter provisions are undoubtedly aimed at reducing the risk of future HIV infections, the bill as it stands undermines public health efforts to encourage people to learn about their HIV status and puts a disproportionate responsibility on people living with HIV. Some provisions in the current bill are a positive step however: outlawing pre-employment HIV testing and allowing young people from the age of 16 to receive an HIV test without parental consent. In particular, the clause on non-discrimination in the work place has been a long standing demand by civil society and will, I am sure, be welcomed by many in Botswana.

More could be said about the bill and surely Botswana civil society will be making their voices heard in parliament and in the media. But what is most frustrating is that for all the laudable efforts by the government to devise a national HIV programme based on support, openness and availability of services (including anti-retroviral treatment), Botswana has consistently failed to create an enabling legal environment that supports human rights and ensures non-discrimination of people living with HIV.

The National AIDS Council (NAC) of Botswana received a comprehensive report on HIV and the law as far back as 2005. I was a member of the council at the time and still have vivid memories of the lengthy debates about necessary law reform that would help to remove some of the barriers to an effective HIV response. But the report was never acted on. Seven years later, a poorly drafted piece of legislation is being debated in parliament that will undermine a response based on respect, dignity and openness.

Last week in the UK, the Global Commission on HIV and the Law launched its report presenting a coherent and compelling evidence base on human rights and legal issues relating to HIV. Former president of Botswana and long serving chair of the Botswana National AIDS Council, Festus Mogae, was one of the high profile commissioners involved in the report. It is disheartening to think that such an ill informed and badly formulated bill is now being debated in Botswana under his watch and one can only hope that his political influence and wisdom will prevent it from being passed.

This recent episode is just another example of how the law is often not used to promote a legal environment that supports access to HIV services but rather creates an atmosphere of distrust and persecution, fuelled by stigmatising attitudes against people living with HIV. It is sad to think that 30 years into the epidemic we have still not embraced a culture of equity, empowerment and support. Debates such as the current one in Botswana’s parliament also remind us about the urgent need to continue supporting civil society even in relatively well resourced countries in order for them to play the watch dog role that is so desperately needed and to ensure that the public is given the democratic space to critically examine law reform processes.

What is needed is not more well meaning rhetoric about the importance of human rights at international level, but rather support to those on the ground that hold political actors accountable to translate such rhetoric into reality and in the best interest of those with less influence and voice.