I recently experienced one of the biggest scares of my life when my dad wound up in the emergency room for his failing heart. My dad, who is 59 years old, suffered a heart attack seven years ago around this time of year. In an eerie coincidence, the day he had his heart attack, his father (my grandfather) passed away. It was one of the hardest phone calls I had ever gotten. While it was scary, it was not entirely unexpected. Heart disease and high blood pressure runs in his family. His father and one of his brothers had both recently suffered heart attacks.
Following the heart attack, my dad had a quadruple bypass, which seemed to do the trick for a while. He also completely changed his lifestyle after the heart attack and started eating healthier and exercising regularly. His healthier diet included exchanging lean proteins for red meat and substituting turkey burgers for hamburgers. He also added more fresh vegetables to his diet. Additionally, he stopped drinking alcohol and smoking cigarettes. He seemed to be doing much better and had adjusted to his new lifestyle rather easily.
However, after a few years he got lazy with his exercise and healthy diet routine. He started drinking and smoking again. Unfortunately, this all caught up to him.
About a year ago, my dad helped me move from my apartment in New York to Washington, DC. While he was visiting, we spent time with my aunt and uncle (his brother and sister-in-law) who live outside Baltimore, MD. My aunt noticed that he was having a hard time breathing and keeping up with everyone when we went for a walk. He claimed it was due to the humidity. After all, it was summertime in Washington, DC, is was a hot summer, and the humidity in the city was much more extreme than he was used to in Maine. I brushed it off—maybe I was in denial.
I see my dad a few times a year and we regularly communicate over the phone and via text messaging. Never wanting to worry me, he has a tendency to act as if he is healthy and feels fine—until recently.
We had planned for him to come visit me last month for the weekend. Leading up to the trip we talked frequently on the phone, excitedly planning adventures we would go on and which museums and restaurants we would explore when he was in town. The day before he was supposed to fly out to see me, he told me he was having an especially hard time breathing and that he didn’t think he would be able make it through the airport—in fact he could barely walk from his car in the parking lot to the pharmacy to pick up his prescription medications. This worried me. I asked that he immediately go see his doctor. He explained that he had been trying to get an appointment to see his cardiologist for months but they kept rescheduling it.
I know how excited he was to visit me and I knew that cancelling his trip meant that something was really wrong. I was very concerned. I spoke to him on the phone that night and begged him to go to the emergency room. I offered to get him a car service, but he refused. He said that he would the next day. I called his neighbors and asked them to check in on him. Over FaceTime with my dad, I was hysterically crying because I knew something was really wrong. Fortunately, my tears and concern worked because the next morning he drove himself to the emergency room. He was admitted immediately. I called and found out he was being admitted. I ended up leaving work that day and catching the next flight up to Maine to see him.
He was in congestive heart failure and had excess fluid buildup in his lungs. Because his heart was not able to work as hard as it should, it was not able to pump blood to the rest of his body and his lungs were full of fluid. He was given a “water pill” or diuretic to help release the fluid, which essentially caused him to urinate a lot and flush out most of the excess fluid. Over the course of two days he lost over twenty pounds of fluid. This would be a lot for a normal person but my dad is a thin guy, and so for him it was even more worrisome. I learned from his medical team that it is extremely important for a patient with congestive heart failure to weigh themselves every day, and that a change in weight of more than two pounds in two days is cause for concern. This could mean that there is excess fluid buildup.
All of a sudden I became a caregiver. My dad was in the hospital for three days and I was by his side almost the whole time. I spoke to all of his doctors, nurses, and the nutritionist and made a plan of action. One of the biggest dietary concerns for someone in congestive heart failure is sodium intake. I for one, did not realize how much sodium is in almost everything we eat. For example, one slice of pizza can have anywhere from 500-1,200 mg of sodium, and the average recommended amount of daily sodium intake is 1,500-2,000 mg. However, the average American consumes approximately 3,400 mg of sodium daily.
When my dad was released from the hospital, I brought him home and threw out almost everything in his pantry and refrigerator. We made a list of low sodium, heart healthy foods. I took him shopping and bought all low sodium foods. We read the nutrition labels on every single item we bought. I encouraged him to eat more fresh fruits and vegetables and less processed foods. Luckily, my dad generally eats relatively healthy and cooks all his own meals, so this was not a big adjustment for him. However, we had to completely cut out alcohol and cigarettes.
In order to track his progress, I created a Google Doc so he can document his weight, blood pressure and pulse, exercise, food intake, and sodium intake daily. By using this technology, I am able to frequently monitor that he is tracking his stats and his food, and that he is staying within the recommended amounts of sodium. Initially, I wanted him to use an app to track his sodium. However, my dad comes from the generation where apps do not rule. While he has a smartphone and can text and email and send emoji’s, he would not use an app. Alternatively, I thought of giving him a journal where he can track the information the old fashioned way on pen and paper. However, I knew there wouldn’t be the same level of accountability using this method because my dad lives alone and I live hundreds of miles away so I wouldn’t be able to monitor his stats and diet whenever I wanted. Eventually, I decided on Google Docs because it is a system that he can easily learn and I—as well as my sister and anyone else I allow to access it—can monitor him daily. This is a technology he feels comfortable using because it is not overly intrusive or burdensome and he already has a computer that he feels comfortable typing on because it has a larger screen than his cellphone.
We have been utilizing this technology for approximately a month. So far, this plan has worked well—in fact, I think it is actually working better than I originally planned. My dad goes above and beyond and actually takes his blood pressure and pulse three times a day and inputs it into the document. This allows him to utilize technology in a way that he feels comfortable, but also makes it so the information is readily accessible and available to his caregiver, namely myself. The reason this works so well is because it keeps him accountable, and accountability is an important part of maintaining a healthy lifestyle. There are numerous programs that use accountability methods to monitor and maintain health such as Weight Watchers for weight loss, and Alcoholics Anonymous and other recovery programs for addiction.
This is still a work in progress and my dad is not completely out of the clear, but I wanted to share this simple yet effective solution that we have come up with to monitor my dad’s health and keep him accountable for eating right and exercising. I am hopeful that his health will continue to improve and he will continue to use and appreciate this technology.
The right to privacy and confidentiality for health information is deeply rooted in American history and tradition and in federal and state law. People living with HIV also have special concerns in keeping their health information private. These individuals have long faced harassment, discrimination, and stigma from society because of their HIV infection, and they still face this in today’s society. HIV also disproportionately affects marginalized populations such as gay and bisexual men, people of color, people engaged in sex work, and people who use drugs, and these groups face increased stigma.
In recent years, there has been increased concern with companies and new technologies not keeping HIV status information private. This blog post will discuss the Aetna privacy breach last year where 12,000 customers of Aetna had private information about their HIV status exposed. It will then explore the recent news that the dating application Grindr provided HIV status information to third party companies. Finally, it will look at the new field of molecular HIV surveillance, which can be used to identity and target effective HIV prevention interventions but also raises some privacy concerns for people living with HIV.
Aetna Privacy Breach
In July 2017, the insurance company Aetna mailed letters containing information about changes in pharmacy benefits and access to HIV medications and accidentally exposed customer HIV statuses in clear envelope windows. The plastic window on the envelope not only revealed patients’ names and addresses but also referenced filling prescriptions for HIV medications. The implication of this was that whoever saw the letter was able to see individuals’ protected health information.
The letters were sent to Aetna customers taking medications for HIV treatment as well as for pre-exposure prophylaxis (PrEP), which involves people at high risk for HIV taking a pill containing two HIV medications to prevent HIV infection. In August 2017, attorneys from the Legal Action Center and the AIDS Law Project of Pennsylvania wrote a letter to Aetna demanding that Aetna stop sending customers mail that illegally exposes that they are taking HIV medication. Sally Friedman from the Legal Action Center said at the time that this disclosure of HIV status information by Aetna “creates a tangible risk of violence, discrimination, and other trauma.”
Aetna ended up settling a class action lawsuit related to this breach and agreed to pay $17 million to the individuals impacted. The settlement included a provision that Aetna institute a new “best practices” policy to prevent such a privacy breach from happening in the future.
Grindr Privacy Breach
Grindr is a dating app for LGBTQ individuals and has more than 3.6 million daily active users worldwide. The app has recently worked to address the stigma surrounding HIV and encourage users to get regularly tested for sexually transmitted infections. The app also offers free ads to remind users to get tested by showing HIV testing sites and has an option to remind users to get tested every 3 to 6 months.
News broke in April 2018 that Grindr was providing two other companies, Apptimize and Localutics, with information from the dating profiles of Grindr users. This information included an individual’s HIV status and a last tested date where users could list the date they were last tested for HIV. Grindr sent this information to the third party companies with GPS data, phone IDs, and individuals’ email addresses. This made it possible to identify specific users and their HIV status. Grindr claimed the information was being sent to these companies because they are software vendors hired to improve the app, but Grindr agreed to no longer provide HIV status as part of the data sent to third party companies.
Molecular HIV Surveillance
In the fight to end the HIV epidemic, there is now more of a focus on interrupting HIV transmission within clusters of people. There is an emerging field of molecular epidemiology that is using phylogenetic analysis to examine mutations in HIV strains to identify transmission patterns within communities and sexual and drug-using networks. The application of these tools offers an exciting way to effectively identify and intervene in places where HIV transmission is occurring. But there are some limitations and concerns with this type of information that must be considered. While the information can give a probability that two persons with HIV are closely linked, perhaps suggesting HIV transmission from one person to another, it does not show who transmitted HIV to whom. This technology also raises numerous unresolved privacy issues. These issues include potentially exposing individuals to criminalization, employment discrimination, or physical harm.
The O’Neill Institute will conduct a stakeholder convening in June 2018 that will bring together people living with HIV, federal, state and local health officials, ethicists, medical providers, and other stakeholders to identify and understand critical issues and facilitate a dialogue for how to proceed with the development and exploration of this technology in the way that maximizes HIV community support and minimizes harm. An appropriate investment in policy development to protect individuals will be critical to effectively using this technology to prevent HIV transmission.
“We will have to put poor people from affected communities at the centre of our response. We will have to organise and mobilise. And then be willing to hold our governments to account.”
~ Anele Yawa, General Secretary of the Treatment Action Campaign
A turning point for tuberculosis?
This could be a big year for tuberculosis. In November of last year, health ministers from over 100 countries convened in Moscow and produced “the Moscow Declaration to End TB,” a document that many saw as a potential turning point in an otherwise largely complacent response to one of the greatest human rights issues of our time.
The Moscow Declaration called for the United Nations to hold what is called a “High Level Meeting.” High Level Meetings have historically seen UN member states come together and make major commitments on various social issues. The High Level Meeting on TB will take place in September of this year and its outcomes will likely plot the course of the TB response for years to come.
The Moscow Declaration also called on the World Health Organisation to develop an “Accountability Framework for the TB Response;” the framework is meant to guide the next era of the TB response and ensure accountability for outcomes of the High Level Meeting. The WHO recently published its draft of the framework and invited public comment.
We were surprised to see that the draft framework does not make any mention of a role for people affected by TB. It does not understand accountability as being owed to and fought for by people and communities impacted by TB and so fails to include the very people it is meant to serve.
Rather, the draft framework sees accountability as existing primarily between the “global” and “national” levels; that is to say, between member states to the WHO and UN as a collective and member states individually. To its credit, the draft envisaged a role for “civil society,” but seemed to relegate that role to consultation, participation in review bodies, and reporting to the WHO and UN. Again, it did not see accountability as being owed to civil society.
The question of leadership
The history of all struggle for justice teaches that no person can give liberation to another. Thus, movements the world over must wrestle with whether and how to work with those outside their immediate struggles. Many find they must confront not only those who explicitly seek to oppress them but also those who purport to help them.
The conversation is relevant to the global response to tuberculosis, because, while it is the poor who are directly impacted, the response undeniably demands funding and other support from richer countries and global entities such as the United Nations and World Health Organisation.
Therefore, this is the question: Can the global health world imagine a TB response focused on lifting up and deepening relationships with those most affected by TB and committed to supporting and following their leadership?
Today’s great civil rights leader Rev. Dr. William J. Barber, II – known for the Moral Monday movement and now the Poor People’s Campaign; A National Call for A Moral Revival – shows an approach. He preaches the necessity of a “fusion movement” that brings everyone along in the struggle for justice, but that is led, as a matter of morality, by those most impacted by systemic racism, poverty, the war economy, and ecological devastation.
Following the lead of those most impacted does not abdicate the responsibility of international bodies, governments and civil society. Quite the opposite: it ensures real accountability. Anele Yawa, the great activist and General Secretary of the Treatment Action Campaign, a poor-people’s movement in South Africa, says that in order to win the fight against TB:
The role of the World Health Organisation
The O’Neill Institute’s submission on the WHO’s draft accountability framework encouraged the WHO to view accountability as being owed primarily to the affected—and therefore to put poor people from affected communities at the center of the framework and empower their efforts to hold their governments to account. An accountability framework that does this, we argue, must understand the affected as the leaders of the response and enable their efforts to seek accountability through advocacy, organizing, mobilization, whistleblowing, litigation, the use of other domestic enforcement mechanisms, and other uses of the law.
We also pointed out that communities and activists on the ground are the most effective in securing accountability, yet their efforts are desperately underfunded—as Yawa argues, we won’t win unless we fund the fight from the ground up. The WHO can help by producing an accountability framework that encourages funding commitments channeled to the local level, where rights are most directly fulfilled or violated and where communities struggle every day to claim rights and hold the TB response to account.
The accountability framework must, in other words, help people impacted by TB lead the fight against it.
Leader of the Student Nonviolent Coordinating Committee Stokely Carmichael wrote in his definitive 1966 essay on black power, What We Want:
The WHO has an opportunity to do as Carmichael, Barber and Yawa advise. This could be a big year for tuberculosis—the WHO has a role in charting a new way forward for international public health. Those in charge of drafting the accountability framework will soon produce a new, finalized accountability framework for the TB response—we will soon know whom the WHO has chosen to put in a position of strength. Which voices will we hear?
Over the past two years, the O’Neill Institute has been working in partnership with NMAC to examine the status of biomedical HIV prevention research and implementation in the United States. The focus of this work has been to explore how to bring the promise of biomedical HIV prevention to all communities highly impacted by HIV and to ensure that communities of color in particular are not left behind. Biomedical HIV prevention offers a range of tools that can effectively prevent HIV infection. These tools include treatment as prevention (TasP), pre-exposure prophylaxis (PrEP), and post-exposure prophylaxis (PEP).
Last week, NMAC released a new report, “Expanding Access to Biomedical HIV Prevention: Tailoring Approaches for Effectively Serving Communities of Color,” as the second part of its two-part Blueprint for HIV Biomedical Prevention. Jeffrey Crowley and I prepared the report for NMAC. The report highlights the unique challenges that people of color face in HIV prevention, care, and treatment and gives ways to improve access to biomedical HIV prevention in communities of color.
The report outlines population-specific recommendations to more effectively meet the needs of transgender people of color, Black and Latino gay and bisexual men, women of color, and adolescents and young adults of color. It also includes further steps that can be taken separately in service of transgender women of color and transgender men of color.
Recommendations for Transgender People of Color
Recommendations for Black Gay and Bisexual Men
Recommendations for Latino Gay and Bisexual Men
Recommendations for Women of Color
Recommendations for Adolescents and Young Adults of Color
Increasing access to biomedical HIV prevention without reaching people and communities of color and understanding their needs, values, cultural backgrounds, and barriers to care will cause us to expand rather than shrink HIV-related disparities and health inequities. To learn more, you can read this report and the “Blueprint for HIV Biomedical Prevention: State of the State” report here.
I stand with immigrants. I stand with refugees. I stand with migrants the world over.
I stand with immigrants because outside the Cradle of Humanity, we are all immigrants. Even there, how many people trace their roots to the dawn of humankind, and how many come from someplace else?
I stand with Immigrants in my own country, the United States, this land of liberty, where we now betray the promise of justice for all – for where is the justice in breaking up families, or sending people back to countries where they may be killed, or forcing people driven by economic or other desperation away from the country of their birth to risk deadly desert treks in Texas and Arizona? I stand with refugees and all immigrants in my country because we must be the land of the Statue of Liberty, of Emma Lazarus’s “huddled masses yearning to breathe free,” the land of a torch of hope held high, not of high walls and hateful rhetoric. I stand because it is a fearful America that closes its doors, not a great America. A fearful America excludes. A great America includes. A fearful America hates. A great America loves.
I stand in wonder at the beauty and intonations of languages that I do not understand, words in languages of lands near and far that I hear around the corner, that my neighbors speak in my building. Hear the music. If you have trouble connecting with words, connect with a smile. Bask in your fortune that people from parts of the world to which your travels may never take you have come to you instead, these once foreign, once unfamiliar, gifts of sharing and learning and understanding. Welcome.
I stand with refugees and other migrants because I am ashamed of my country. The United States has historically been the greatest contributor to climate change, which is now disrupting rainfall pattern and leading to economic dislocation that drives people to leave countries in West Africa. People are forced to leave their homes in part because of us. Yet we offer refuge to so few.
I stand because I am proud that people want to come to my home, a land of many cultures and languages and peoples. The fabric of America is the fabric of the world. Unweave that fabric, unweave America. A nation homeless.
I stand with the asylum seekers in the United States who flee gang violence in Central America. I stand will all immigrants who are here now and want America to be home, who call America home, who know America is their home.
I stand with refugees because my grandparents survived the Holocaust. They were refugees welcomed by Sweden, then the United States. My family is a family of immigrants to America. My father came in January 1952 by way of the torch held high.
I stand with asylum-seeking immigrants in Israel, fleeing the totalitarian regime of Eritrea and the recently genocidal regime of Sudan, yet finding themselves now in a land that treats them as criminals. Is this the country of tikkun olam, repair the world, of a people who were slaughtered when the world denied them refuge? A strong Israel welcomes. A strong Israel treats African and Palestinian and Jew alike, with dignity.
I stand with the Rohingya of Burma and the people of Syrian, who more than 70 years after “never again” flee genocide and crimes against humanity. On our watch.
I stand with the refugees fleeing mass atrocities in South Sudan and the Democratic Republic of Congo, the refugees who fear the Taliban in Afghanistan, the refugees who are turned away from Australia, the Palestinian refugees in Gaza, the West Bank, and beyond, refugees generation after generation.
I stand with internal migrants too, including those Chinese laborers and their families whom the Beijing government has deemed “low-end people.”
I stand for the human rights of all immigrants, of all migrants, for their rights to health care, education, employment, their right to be integrated into civil and political life, because they are people. When they adopt a new home, their new home should adopt them. “Them” is “us.” “They” are “we.”
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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.