Joint input for the report on the impact of unilateral coercive measures on the right to health for session of the UN Human Rights Council

Sphere Foundation was an NGO based in St. Petersburg, Russia since 2011, through the years having evolved into the biggest Russian LGBT+ foundation. From the onset, Charitable Foundation ‘Sphere’ acted as a fiscal sponsor and implementing body for key LGBT+ rights initiatives across Russia. In April of 2022, it was ruled to dissolve the Foundation following a court process brought on by the Russian Ministry of Justice where the organisation’s activity ‘mainly aimed at LGBT+ people’ was found as allegedly ‘undermining moral foundations of the Russian society’. Sphere’s team has remained intact and maintains its work, preserving and developing programs and activities aimed at supporting the rights of the LGBT+ community throughout Russia.

LGBT-Initiative group “Coming Out” is a regional nonprofit initiative group founded in 2008 in St. Petersburg, Russia. Coming Out works for universal recognition of human dignity and equal rights of all regardless of sexual orientation or gender identity by lobbying and advocacy, educational and cultural events, and providing psychological and legal services to LGBT+ people.

Commentary by “Centre-T”  which is an initiative group working for improving the quality of life of transgender people in Russia. Centre-T helps transgender and non-binary people, people in gender search, people who are going through detransition as well as their families and friends.

Introduction

Since the full-scale Russian invasion to Ukraine on February 24, 2022, many unilateral coercive measures have been imposed against Russia. Some of these measures influence the lives of ordinary people including their right to health. According to official data, not so many drugs leave the Russian market, but now more logistical problems with medication supply have been appearing that have not yet been resolved. According to the independent media outlet Meduza, international pharmaceutical companies have stopped supplying Russia with a number of antibiotics, anaesthetics, drugs used to lower glucose levels, and ones for erectile dysfunction^[1]. Besides, Meduza reports that many pharmaceutical companies have suspended clinical trials in Russia, which will affect access to new drugs. Therefore, unilateral coercive measures have affected the realisation of the right to health of many Russians, but they have had a particularly strong impact on vulnerable groups such as LGBT+ people. Further we will reveal exactly how the sanctions restrict the right to health of Russian LGBT+ people.

Challenges to healthcare in Russia that arise from unilateral sanctions

Due to punitive sanctions, including hindering access to international shipment pathways, medical supply chains have been disrupted. Therefore, access to medications, including gender affirmative hormone therapy (GAHT), has become difficult, posing a major problem for Russian transgender people and their right to health. Additionally, access to HIV tests and medications is also affected by these sanctions, which is a serious concern in the context of the HIV epidemic in Russia^[2].

Also, there are significant problems with access to antidepressants needed by many LGBT+ people who experience minority stress^[3]. Being at permanent risk, Russian LGBT+ people are one of the most vulnerable groups, especially now that they are subjected to intersectional discrimination in Russia and beyond. 

At the end of 2022 and beginning of 2023, “Coming Out” group and “Sphere” foundation conducted a joint quantitative research on the situation of LGBT+ people in Russia. 32% of our respondents report that the war and anti-war sanctions against Russia affected access to vital medicines. Among transgender people, the share of those who suffered the impact of war and sanctions due to changing access to essential drugs is 50%. The respondents report problems with access to GAHT, ARV therapy, antidepressants, and, in some cases, problems with access to asthma medications and drugs for mastopathy.

Answering the open question about access to medicines, our participants said the following:

— “They stopped supplying medicines that work more effectively and with fewer side effects than Russian counterparts.” (Cisgender lesbian, 44, Moscow).

— “It has become much more difficult to look for Estrogel [a gel pump with estradiol used in hormone therapy for transgender women]. I have no idea where to buy androсur [an antiandrogen and progestin medication used as a component of feminising hormone therapy for transgender women]. It has also become much harder to get many other medicines. My friends do not know where to look for antidepressants, and I cannot buy asthma medicines everywhere. In addition, all this has grown in price by one and a half times and permanently hit my wallet hard.” (Transgender woman, 30, Sverdlovsk region, Ural).

— “Sometimes there are medication supply interruptions.” (Cisgender lesbian, 29, Voronezh region, south of Central Russia).

— “After the war, I faced problems with access to antidepressants, but I have still managed to get them. But they have become needed for me precisely because of the war.” (Cisgender bisexual or pansexual woman, 27, Moscow).

— “I can still buy medicines, but prices have risen very significantly. Because of this, I can’t always get them on time, and I have to take breaks from taking hormonal drugs.” (Heterosexual transgender woman, 30, Ryazan region).

— “They stopped supplying drugs that are more effective and have fewer side effects than Russian counterparts.” (Homosexual cisgender woman, 44, Moscow).

Transgender people’s health is in particular danger. According to the research^[4] conducted by “Sphere Foundation” in 2022, LGBT+ people encountered problems with access to GAHT medications in Russia even prior to February 24, 2022. Among those problems are:

— Almost complete absence of GAHT medications production in Russia,

— Lack of registration for a number of GAHT medications in Russia,

— Lack of financial coverage for GAHT medications from the state medical insurance funds.

However, after Russian full scale invasion, the existing problems worsened, and new ones emerged, specifically related to the imposed sanctions, inflation, currency exchange rate changes, and forced migration. Among those new complications are:

— Absence of medications in pharmacies due to difficulties with supplies from countries where they are produced,

— Inability to order unregistered medications in Russia from countries where they are produced and sold due to sanctions by foreign governments and disruptions in delivery services,
— Inability to purchase medications prescribed by Russian doctors abroad, difficulties in legal confirmation of status.

A fairly high percentage (23%) of people are purchasing medications illegally — not in pharmacies, but from individuals, in unlicenced stores.

The reduction in the availability of hormone replacement therapy (HRT) drugs, as well as the acquisition of unlicensed HRT drugs or those not recommended by WHO and WPATH for HRT, carries risks for the health of transgender individuals.

Against the backdrop of the forced cancellation of HRT or the inability to start it, gender dysphoria and associated mental disorders are exacerbated. Among such disorders are depression, anxiety-depressive disorder, suicidal behavior and thoughts, and self-harm. The use of illegal and unapproved drugs for HRT can lead to more severe adverse effects.

There is also a high risk of criminal prosecution for people who illegally purchase testosterone drugs.

According to activist Max Goldman, not just transgender people, but the entire portion of the Russian population that has to regularly purchase medication, such as insulin and antidepressants. Sanctions have led to an increase in the cost of hormonal medicine, antidepressants, and other medications. When the sanctions were introduced, hormonal medication for transfeminine persons began to disappear, which led people to buy up the remaining medicine for future use, only worsening the deficit. The injection form of medicine for transfeminine persons, previously supplied from Ukraine, became unavailable. A similar trend took place regarding medicine for transmasculine persons, as international supplies were diminished, and the variety of available medicine decreased.

All of this has led to the fact that some transgender people have to change their medication, if possible, or suspend hormone therapy entirely. This, in turn, leads to a regression of the hormonal transition, increased dysphoria, deterioration in the general mental state, and sometimes even physical health. In the case of antidepressants, some people have lost access to pharmacotherapy, which is especially relevant for transgender people as representatives of an oppressed and unprotected group in the LGBT+ community.

Changing accessibility of GAHT

Despite the fact that import of medication is not subjected to sanctions directly, the indirect consequences of economic sanctions are evident^[5].

As it follows from the research on the accessibility of GAHT in Russia after 24 February 2022 conducted by “Sphere Foundation”, many respondents faced consequences of drastic alterations in the supply chain from Japan. Certain hormonal medicine is manufactured in Japan and the suspension of shipping to Russia in 2022 affected the supplies.

According to the respondents, most of the issues concern the following medicine:

— Cyproterone acetate (44 persons mentioned);

— Estrogel (37 persons mentioned);

— Divigel (32 persons mentioned);

— Progynova (25 persons mentioned);

— Femoston (22 persons mentioned);

— Injectable estradiol (18 persons mentioned);

— Nebido (14 persons mentioned);

— Androgel (12 persons mentioned);

— Verospiron (10 persons mentioned);

— Sustanon (10 persons mentioned).

Among those who have experienced problems accessing medicines:

— 100 persons started to pay more for their medicine;

— 53 persons started buying their medicines elsewhere;

— 53 persons changed their drug;

— 25 persons were forced to suspend their therapy;

— 20 persons started buying their medicines outside pharmacies (in unofficial places);

— 4 persons left Russia.

The respondents shared their experiences:

— “I can’t order intramuscular injections, I have some reserves for ~1 more month, I can hope for T-Action’s help… I don’t know what to do, stop intaking hormones equals death to me.”

— “Proginon is not produced in Russia but is produced in Japan. Japan severed postal communication with Russia. I will have to look for other options for injections from other countries and perhaps less quality.”

— “Most shipments from Japan to Russia have been recalled back to the sellers, which makes it impossible to receive Progynon-Depot.”

Changing accessibility of antidepressants

According to an interview with a psychiatrist practising in Moscow (further named El), their patients are facing serious complications when it comes to the access to medication. By March 2022, patients began noticing shortages and lack of their prescribed medications at retailers, including generics.

The shortages affected many of the imported medicines used in psychiatry practice, such as Cipralex, Strattera and Zoloft. El highlights that all the medicines used in ambulatory care to neutralise the side effects of neuroleptics for patients with the schizophrenia spectrum disorders began to disappear from pharmacies in autumn 2022. As of February 2023, there was no medicine available, which increases the risk of abrupt drop of medication treatment by the patients due to the side effects. Other medications re-emerged after a while with higher prices.

The most notorious case of permanent shortage is Zoloft produced by Viatris (ex Pfizer). El stresses the high importance of this particular medicine in their practice, as it is the first line prescription for pregnant women and women postpartum as well as for minors. Thus, Zoloft has been of high importance for those suffering from postnatal depression.

Psychiatrists had to change the scheme of medication for their patients, based on the availability of respective medications, and prescribe generics: at first the ones produced by the notorious pharmaceutical companies, later the ones manufactured in India and only after those became unavailable — generics produced by Russian pharmaceutical companies which cause serious side effects. As the change of medicine itself causes side effects the combination of these factors may lead to serious health risks, noticed El. Most of Russian generics were released last year, which demonstrates that the authorities were aware of the shortages and the high speed of development which could have affected the quality of medicine.

According to El, their fellow colleagues contacted the manufacturer of Zoloft in regard to the lack of the drug on the Russian market with requests for information about the planned shipments. According to El, the reply was that Zoloft’s shipment to Russia was terminated with no further explanation.

However, some medicines re-emerged at retailers with higher costs, says El. According to them, one of a very few medications for ADHD diagnosed patients certified in Russia, Strattera costs approximately 6000-7000 RUB (ca. 88 EUR) in official pharmacies, whilst online pharmacies sell the same medicine for 3000-3500 RUB (ca. 42 EUR).

Changing accessibility of  HIV therapy and test systems

HIV-positive people and their right to health have also been threatened by unilateral coercive measures. None of the ARV drugs and HIV testing systems have been banned from distribution in Russia. However, many pharmaceutical companies faced logistical difficulties, which led to delays in the supply of drugs and tests^[6].

According to HIV activist Yana Kolpakova, there were problems with access to modern therapy with minimal side effects even before the Russian war in Ukraine and the imposition of sanctions against Russia^[7]. However, with the imposition of sanctions, the situation worsened: there were interruptions in the supply of Tivicay and other ARV drugs and HIV tests.

According to one of the Russian NGOs monitoring^[8] access to HIV therapy and testing, in 2022, there were problems with access to CD4 tests (used in monitoring and evaluating the effectiveness of antiretroviral therapy for HIV-infected patients). Considering that Russia is one of the world leaders in the rate of spread of HIV infection, any additional barriers to access to ARV therapy and HIV testing such as sanctions are a significant problem.

Recommendations

— Take measures to ensure that sanctions imposed on Russia do not affect vulnerable groups among the country’s population, including but not limited to LGBT+ people.

— Take measures to ensure access to necessary medication for citizens of Russia who belong to vulnerable groups, both inside the country and abroad.

— Demand that Russia fulfils its international obligations in the field of human rights.

— Strengthen humanitarian and financial assistance for the programs working with transgender people and people living with HIV.

— Urge Japan to lift the ban on shipments of essential medicines to Russia.

For any additional information, please contact:

Polina Kotova, monitoring and advocacy officer

“Coming Out” LGBT Initiative group polina.k@comingoutspb.ru 

Saša Belik, advocacy officer

Sphere Foundation advocacy@spherequeer.org 

 

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[1] Podvodim itogi pervogo goda sanktsiy dlya rossiyskogo rynka lekarstv [Summing up the results of the first year of sanctions for the Russian drug market] // Meduza. 27 February 2023. 

[2] At the end of 2021, Russia entered the top five countries with the highest rate of spread of the human immunodeficiency virus (HIV).

[3] High levels of stress faced by members of stigmatized minority groups

[4] Availability of hormonal therapy in Russia after February 24, 2022 

[5] Drugmakers, device companies say sanctions may hinder medical supplies to Russia // Reuters. 2022, March 3.

[6] Pereboi v tsifrakh: 2022 god [Breakdowns in numbers: 2022] // Pereboi [Breakdowns]. 2 December 2022.

[7] Yana Kolpakova: «Zakon o „LGBT-propagande“ maksimal’no uslozhnit profilaktiku VICH» [Yana Kolpakova: “LGBT propaganda law will make HIV prevention as difficult as possible”] // Coming Out. 1 December 2022.

[8] They preferred to remain anonymous since a joint report with organisations recognized as “foreign agents” in Russia could worsen their situation. However, they gave us a comment to write this input. Sphere Foundation and Coming Out initiative group were designated as “foreign agents” in 2016 and 2021, respectively.