A new documentary film opening in UK and Irish cinemas this week tells the story of what its makers call “the Crime of the Century” – how available low-cost antiretroviral medicine was blocked from reaching Africa and other parts of the global south in the years after 1996. The film signals the dangers of the increasingly-perilous outlook for access to essential medicine in developing countries.
Fresh from its much-talked-about premiere at the Sundance Film Festival in Park City, Utah, last month, Fire in the Blood opens at the Irish Film Institute (IFI) in Dublin and the Prince Charles Cinema in London later this week. The film will be released in cinemas across the UK on Monday 25th February. The film tells a harrowing story of inhumanity and heroism, with a highly compelling cast of characters. It details how it could come to pass that millions upon millions of people, primarily in Africa, were left to die horrible, painful deaths, while the drugs which could have saved them were being safely and cheaply produced and distributed just a short airplane ride away.
“I was curious to see what the reaction in the US would be”, says writer-director Dylan Mohan Gray. “So much indoctrination about the necessity of high drug prices has gone on there that the Big Pharma Research & Development (R&D) defence is very much a sacred cow… even those with profound reservations about how the industry behaves tend to grudgingly accept its validity. This is very easy for me to understand, since I was more or less that way myself when I began digging into all this.” Gray was, however, gratified to discover that the American audiences who waited in line to attend six sold-out screenings at Sundance had much the same reaction after seeing the film that he had had when he began to work on the story. “There is a very strong sense of betrayal when people find out what their governments have done in their name… and a very powerful conviction that the prevailing system of developing and commercialising medicine has to change”.
As the film points out, drug companies actually do very little basic research for drug discovery. “84% of drug discovery research is funded by government and public sources”, says Gray, citing the landmark work of Professor Donald Light, “Pharmaceutical companies fund just 12% of such research, while the lion’s share of their spending goes into marketing and administration.” These facts will come as little surprise to those familiar with the industry, but many have never really contemplated the repercussions of pricing essential medicines at levels only a tiny sliver of the world’s population can afford.
While the film tells the story of how multinational drug companies and the Western governments collaborated to keep low-cost generic AIDS drugs out of the hardest-hit countries at the height of the HIV/AIDS pandemic – at a cost of ten million or more lives – it also tells the fascinating story of the unlikely group of people which came together in order to try and break this blockade. Among this number were front-line doctors, HIV-positive activists, generic drugmakers, intellectual property specialists and individuals of global stature such as Desmond Tutu and Bill Clinton (both interviewed in the film). “That’s what really set this story apart for me”, says Gray. “It was a real-life David versus Goliath tale, full of incredibly interesting, daring, courageous mavericks who took on the world’s most powerful companies and governments to do what virtually everyone else at the time said was impossible (i.e. mass treatment of HIV/AIDS in Africa), and against all odds they won…”
While the inspirational story of how low-cost generic AIDS drugs, first and foremost from India, came to save millions upon millions of lives in Africa (and beyond) is at the heart of FIRE IN THE BLOOD, the film concludes on a distinctly alarming note. “The story this film tells was on the verge of being forgotten, something we can’t afford to let happen”, says Gray. The film details the tireless efforts of Western governments, working on behalf of industry, to impede and cut off supplies of affordable generic medicine from countries like India and Thailand to other parts of the global south, primarily by means of bi- and multilateral trade agreements which low- and middle-income countries are placed under enormous pressure to sign.
“The drug industry is stagnant, its pipeline is anemic and it has pinned all its future hopes on China and India”, notes Gray. “Almost all these companies are publicly-traded, which means their bosses have to keep turning profits quarter-by-quarter if they want to try and keep their jobs… as they see it, they simply can’t afford to take a humanitarian view on issues of access.” With the World Health Organisation having estimated that one-third of all deaths worldwide are attributable to treatable and preventable diseases, largely due to lack of access to medicine, the stakes could not be higher.
Meanwhile, for all its insistence that high prices are the only practical trade-off for an industry that spends so much money on R&D to find new and innovative medicines, Gray noted with a wry smile that the who’s who of senior pharma executives will be gathering in London for the industry’s can’t-miss event, the Pharma Summit, just a few days after FIRE IN THE BLOOD opens theatrically in the UK. “I was amused, but not surprised, to read that the theme of this year’s summit is Should pharma cut its losses and get out of R&D?”.
Araddhya Mehtta is a global heath campaigner for Oxfam GB.
Low investment in the public health sector over the years has left India with a fractured and weak health system, unable to meet the needs of the majority of its citizens. Despite efforts in recent years to strengthen public health system – most notably through the National Rural Health Mission – India has one of the lowest levels of government investment in health in the world, with just four countries (Afghanistan, Chad, Guinea, and Myanmar) allocating a smaller share of their overall budget to health. In 2010 government expenditure on health was just 1% of GDP.
The gap left by the public health system combined with a government policy of proactively promoting the private sector has led to the proliferation of private health providers which are unregulated, unaccountable, and out of control. From initially providing 8% of healthcare facilities in 1949, the private sector now accounts for 93% of the hospitals and 85% of doctors. The number of first class private hospitals in India has ballooned in recent years and health tourism has become big business. But such first class service comes with a high price tag and is out of reach for the vast majority of Indians. Instead, poor people become dependent on unqualified drug peddlers, fake doctors (quacks), and unlicensed shops that are largely unregulated. Up to a million unregistered providers are practicing in India today. When the private sector provides health services on behalf of the state it can make it more difficult for citizens to hold their governments to account and to seek justice.Scandals of corruption, unethical practice and human rights violations frequently break out in national newspapers.
War on women: private clinics exploiting poor women for a profit in Rajasthan, Bihar and Chhattisgarh
Under-privileged women from poor communities in India are being left with crippling debts and poor health after being incorrectly advised by private clinics to have unnecessary hysterectomies. These procedures come with huge price tags and high medical risks. In the case of Bihar, Chhattisgarh, and Rajasthan, the government and the private hospitals in some districts have violated the fundamental rights of women and girls in their failures to provide adequate healthcare.
In the last few years NGOs and citizens legal networks have attempted to investigate the practices carried out by private clinics. Local NGOs, have filed a series of Right to Information (RTI) petitions which shed light on the high number of hysterectomies being conducted.
In Dausa, a district in the rural interior of Rajasthan, thousands of women have been subjected to hysterectomies by doctors looking to make a profit at their expense. Women from the most discriminated low castes and poor economic backgrounds are being targeted because access to free government healthcare is very limited and illiteracy rates are high. In April 2012, it came to light that four private hospitals in the state’s Dausa district removed the uterus of 226 women last year and earned about Rs 14,000 (around $220) from each patient. One of the women who underwent the surgery explained, “I had a constant stomach ache and they removed by uterus, but the pain did not go. Then I went to Jaipur for treatment and it was found that I was wrongly operated upon.”
Kaushalya, a farm labourer was told she must have a hysterectomy when she visited the clinic with stomach pains. She was charged 30,000 rupees for the operation (around $540). “I went to get medication and have a check up. Because the government hospitals are far away I went to a private clinic. They didn’t check me, they didn’t give me any medication. But they gave me an injection and performed an operation. Even though I only had a tummy ache, they took my uterus out. I still have the same stomach pain I had before. I can’t work, I can’t lift heavy things. Being a poor farmer I don’t have any money, so I had to borrow money. So far I have not even been able to pay just the interest.”
Durga Prasad Saini, an advocate for a local NGO, Akhil Bhartiya Grahak Panchayat, said: “women go to doctors with some sort of abdominal pains and are then advised to undergo a hysterectomy with little diagnosis of the problem. The doctors force them to undergo surgery even though it is not necessary and scare the women in their greed for money.” The NGO filed an RTI (right to information) case to try to get to the bottom of the problem. Only 3 of the 5 clinics provided the information but the results were shocking. Nearly 70 per cent of the women investigated had had their uterus taken out – a large number of the women were under the age of 29, with the youngest being just 18 years old. Despite the fact that complaints have been made to the police and local government, no action has been taken. A special committee, which included leading gynaecologists, public health experts and government officials from Jaipur, was set up over a year ago but to date none of the affected women have been visited by committee members or had their testimonies heard.
Dr Gupta, a medical expert and head of NGO Prayas –who work with Oxfam in India, states in his report that most of the women he interviewed in Rajasthan should not have undergone a hysterectomy, and could have been cured with other treatments. Moreover, he explains that a sonography alone is insufficient to determine a need for hysterectomy, and alternative treatments should always be attempted before this invasive surgery is performed. Dr Gupta adds “Subjecting women to unethical, unreasonable and unnecessary hysterectomies or caesarean sections for financial gain is a violation of human rights and most awful form of gender based violence. The mass hysterectomies by private hospitals in Dausa are a wicked act, but such malpractices are happening in other areas as well. Prayas is initiating an intensive investigation against such unethical practices.” Similarly news stories and investigation reports in Chattisgargh and Bihar indicate that unnecessary hysterectomies are common phenomena in rural areas. Recent reports in the Indian Express exposed that many of the women who seek hysterectomies are not informed about the possible side effects, and think of a hysterectomy as an easy cure to stop menstrual problems. Prayas also found that the doctors are not obtaining informed consent for the hysterectomies.
In Bihar, Prayas found that several women had undergone hysterectomies at private hospitals on the same day as their initial hospital consultations. The women had only had sonographies – no additional tests were performed. As Dr. Gupta makes clear in his report, women should undergo several tests and be offered alternative treatments before a hysterectomy is performed. Many of the women interviewed in Bihar, Chhattisgarh, and Rajasthan were misled into believing that there was an emergency and that the surgery was urgent or made to believe they might get cancer if they did not comply with the doctors’ advice. In most cases the women received no paperwork regarding the surgeries, and many of the BPL (Below Poverty Line) women paid out-of-pocket for the operation. The fact-finding team also found that there is illicit recruiting in the villages, involving “middlemen” who convince women to go to private hospitals. Fraud committed by the private hospitals has also come to light, with physical examinations of former patients revealing that some of the surgeries never took place.
NGOs investigating this case have decided to go the Supreme Court to seek justice for these women and bring the unregulated and unaccountable private providers of healthcare to account.
Action for change: Implementing Universal health coverage
These cases are not ‘stand-alone’ cases of poor health care provision they are in fact symptoms of a failing and weak health care system that needs urgent rectification. Private health care providers need to be regulated and controlled and public health care provision needs to be scaled up and improved.
In line with the recommendations of a recent High Level Expert Group report, Oxfam along with its partners is calling for the government to prioritise strengthening and scaling up of government health care which is available to all citizens.
Oxfam wants immediate action to regulate private providers and cease further promotion and funding of PPPs until regulation is enforced and quality and equity performance standards are shown to have improved. Private hospitals, nursing homes and other clinical establishments must be properly standardised to improve rationality of care, regulation of fees, and to uphold patient’s rights.
Oxfam calls on international donors to support evidence-based strategies to expand government provision of health care and not promote scaling-up of private-sector health service delivery in low- and middle-income countries. The private sector’s role needs to be clearly defined and regulated and donors should work with governments to strengthen their capacity to regulate existing private health-care providers.
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Araddhya Mehtta is an Essential Services Global Campaigner for Oxfam GB