By Natalie Flath, aka Natasha, a health advocate and activist based in St. Petersburg, Russia.
St. Petersburg, Russia — On a morning walk down Dostoevsky street here in Russia’s second largest city, with my head phones on to block out the sounds on the street, I try to catch up on the news around the world before I start the work day.
“Euromaiden protests in Kiev.” Hey, that’s where my babushka was born.
“University students crowd the streets of Caracas.” That’s where my mom was born.
“Policeman kills an ex-soldier in Tacoma.” That’s where I was born.
Less noticed are these recent news items:
The Guardian WHO calls for access to hepatitis C drugs
NPR WHO calls for high-priced drugs for millions with hepatitis C
FT Price of hepatitis C drug attacked
Many people are, of course, paying attention these days to the unrest and conflicts in Ukraine, and perhaps most are aware of Russia’s ongoing battle with high HIV rates. But few have paid much attention to the needs of the many thousands of residents in this city, not to mention the 150 million people worldwide, infected with hepatitis C – and how the marketplace approach to this global health need is failing.
I’ve been working with St. Petersburg civil society, two grassroots NGOs, for almost 18 months now. I got this gig from first networking with other organizations while still working in Seattle doing biomedical HIV prevention research. After volunteering one summer to work here with HIV-positive children in a tuberculosis sanitorium, I decided to reach out to activists.
That was before people were paying much attention to Russian activists, other than maybe the outspoken punk rockers Pussy Riot, and before the Ukrainians kicked out their president and Russia annexed Crimea.
What I was focused on was the fact that Eastern Europe and Central Asia, a territory mixed with high- and middle-income countries, is experiencing one of the fastest growing HIV and TB epidemics in the world. I was curious to dig deeper into the faces behind the numbers, tap into my Eastern European roots, and discover all the hype about the grassroots movement.
St. Petersburg is a big, urban city and perhaps not your typical rural village that the term “global health” seems to evoke – but what’s happening here deserves as much attention as the iconic poor, rural village in Africa.
My coworker and HIV-positive friend, Andre, showed me his new tattoo – an angel of death sprawling over his liver.
In 1998, newly diagnosed with HIV, Andre found out he had been co-infected with Hepatitis C (HCV).
The doctor warned him to stop using alcohol and intravenous drugs, but he went home thinking nothing about it. Later he learned that although it is curable, HCV is becoming the leading cause of death among people living with HIV. Despite ARV therapy, HCV disease progression is accelerated two fold by HIV infection.
Andre decided it would be a good idea to go back to the doctor for a check-up. Known as the “silent killer,” HCV initially lays dormant. Andre’s results have shown that he still has time before he needs treatment.
He tells me that he is glad that he can wait because he is not ready to suffer the consequences. Plus, he says, there is no guarantee that the 48-week heavy-duty therapy will cure the virus. It does not justify the stamina and price to overcome the adverse side-effects.
Currently HIV/HCV co-infected patients do not respond well to the traditional HCV treatment, an injectable pegulated-interferon (peg-int) and ribavirin regimen. Without treatment though, liver function as well as HIV related complications worsen.
Together we discuss that a better-tolerated treatment can improve the lives of people living with HIV by reducing co-infection morbidities and mortalities.
Well, great news! A new and approved cure approach is being celebrated now within grasp for the 150 million people living with HCV. The next-generation drug regimens are once daily pills formulated to target a specific stage in the HCV life cycle (classified as directly acting antivirals – DAAs). Less than six months ago the first DAA, sofosobovir (brand name Soldavi), was licensed for use in the US and EU.
But here’s the catch. The drugs come with an exorbitantly high price tag.
Estimates for Gilead’s Soldavi are indicating $80,000 for a 12-week course of treatment. This is more than double an annual average salary in Russia, a country considered high-income by the World Bank.
Andre is spearheading Russia’s grassroots organization, “Patients in Control,” an organized group of patients acting as treatment watch dogs for essential public health medicines. He got involved in 2010 when he witnessed repeated interruptions in drug supplies. He called up his friends and learned that they had already been protesting on Red Square.
Andre joined them on the next run and felt inspired by the success of the movement. The voices of civil society were being heard. A year later, he left his work as a chef and ever since has devoted his life to activism aimed at improving access to HIV treatment in Russia.
When I ask him what he thinks about getting Sofosbovir registered for use in Russia, as a patient and activist, he explains that a cheaper version of Sofosbovir would fundamentally change the epidemic as a whole. “But the price of the drug is outrageous,” he says cunningly.
In St. Petersburg alone, 12,952 cases of HIV/HCV co-infections are recorded. Andre’s partners at International Treatment Preparedness Coalition in Russia, reported that in 2012, the federal government allocated 45 million USD to a national HCV program. Considering the traditional treatment cost per patient, totaling approximately 13,500 USD, 25% of co-infected patients in only one city can be covered. Russian health officials estimate that the HCV epidemic will double by 2017.
These highly-burdened countries are seen as lucrative markets, so creating a convincing argument to reduce prices and expand access is a tough task.
That doesn’t discourage Andre and the patient community from mobilizing for their health and human rights. While I’ve been here for more than a year, I’ve seen the activists raise noise and pressure authorities to reduce prices for the standard peg-int treatment.
Recently a drug tender in St. Petersburg was held and with pressure by “Patients in Control” and the Government’s Center of AIDS, the 48-week treatment course was set to be purchased at 9,000 USD– the lowest price for peg-inf that Russia has yet to see.
In Ukraine and Georgia, treatment access campaigns have pushed big pharma to guarantee a fixed peg-int price to about 5,000 USD per course. As a result, Georgia has recently created an initiative to expand treatment for the sickest patients and people in prisons. Georgia now ranks second in the world for the cheapest HCV drugs.
The executive director of International HIV/AIDS Alliance in Ukraine Andrey Klepikov explained that price reduction in his country was the result of cooperation between international donors, the private sector, government agencies and patient organizations.
Success stories are inspirational to patient groups who are now faced with the reality of the new generation of HCV drugs. The global AIDS response taught us that innovative financing strategies can deliver otherwise-inaccessible treatments to marginalized patients.
The Initiative for Medicines, Access & Knowledge (I-MAK), has already filed a patent opposition against Gilead’s Solvadi in the office of India’s Patent Office. I-MAK states that the drug was developed on preceding science on the verge of patent expiry.
Major price reduction discussions are underway between Gilead and Indian generic companies which are rumored to include 60 low and middle income countries. Treatment access experts believe that contracts for generic production will likely factor out MICs, where 85 percent of the 185 million people living with HCV reside.
On Feburary 22nd, patient groups, including Andre’s colleagues, convened with five major pharmaceutical companies to mark history’s first global Hepatitis C community advisory board meeting. Discussion focused on the global scale up of both the standard drugs and the evolving antivirals on the pipeline. The pharma companies charmed the crowd about prospects over voluntary licensing and assistance programs for low income countries. Access policies for MICS were not mentioned. No timeline was discussed.
The treatment activists went home with no vision in sight of when, how, or even if, the drugs will ever be available to them at an affordable price.
“I call it… a business with blood on its hands,” says Andre.
He tells me stories of friends who have been treated using the standard, long and painful, 48-week course of therapy. He says that most of the time the treatment fails. I asked him what happens after.
“They wait another year and fork up the money, somehow, or they wait for new drugs.”
Andre hopes to enroll in a clinical trial to test the relevancy of the new generation of HCV drugs for Russian patients who are co-infected with HIV. This could help speed up registration and pricing negotiations in Russia.
Manufacturing costs of Sofosbovir are estimated to be only 68–136 USD per course of treatment.
On my way back home through thick snow fall, I can’t help but think about the life saving drug’s influence. If my family never left the Soviet Union, my treatment options would be limited.
When I worked in the lab in Seattle, I sincerely dreamed about the outcome of the biomedical innovations and their use by the people who need them most. Working in the “field” has made me a bit skeptical. Key affected populations face lower socio-economic opportunities and discriminatory barriers to health care services. The patients that I partner with are primarily infected by HIV and HCV through injection drug use, a stigmatized action that pushes people to the margins of society.
Patients already lack access to the current regimens on the global market. So what’s the point of drug innovation if the target population cannot afford these new drugs? The innovations seem out reach more than I ever could have imagined.
I just hope that in the meantime, Andre’s angel is a guardian one.
Natalie Flath, who grew up in Tacoma celebrating her family’s Russian roots, graduated from Seattle Pacific University with a strong interest in global health and development. For the past year-and-a-half she has been working in St. Petersburg with two advocacy organizations, International Treatment Preparedness Coalition in Russia and the EVA Network, the latter a Russian NGO focused on women and children’s health needs.