Author: Pooja Yerramilli

What does Universal Health Coverage actually mean?

Flickr / hdptcarThe aims of Universal Health Coverage (UHC), as defined by the World Health Organization, are: “to provide all people with access to needed health services (including prevention, promotion, treatment and rehabilitation) of sufficient quality to be effective; and ensure that the use of these services does not expose the user to financial hardship.”  Yet as I studied cancer care and control policies in Andhra Pradesh, India, I realized that I did not fully grasp what this definition of UHC actually entails. I particularly took issue with the phrase “to provide all people with access.” When we say that a country or a state has achieved universal coverage – or in the case of the Rajiv Aarogyasri Scheme (RAS), 87% coverage of the state’s population – what does that mean in practice? At first, I assumed that the expansive reach of RAS ensured that 87% of the population could access free tertiary care. But my conversations with state government officials and health care providers suggested otherwise.

As I delved deeper into the state’s policies, I discovered that the widely lauded statistic actually signifies that 87% of the state’s population is simply eligible for RAS, by way of possessing a white ration card. And I came to understand that there is a huge difference between eligibility and accessibility. The focus of my last two posts was the fundamental barriers to care, both on the supply and demand sides. But these posts merely highlighted few of the multitude challenges faced by patients in seeking health services. It is therefore highly unlikely that all those who are technically eligible to benefit from RAS when sick actually do.

Flickr / DFAT photo libraryPerhaps the most fundamental barrier to care, I realized, was one that is seldom discussed – the linkage between services. Even if the state removes the financial barriers to each service along the cancer care and control continuum, from primary prevention to survivorship and palliation, patients may remain unable to access comprehensive care if referral networks are inadequate. In fact, one oncologist I spoke with admitted that he discontinued screening efforts for cervical cancer because he had no way of reaching the patient after testing was complete. Despite obtaining Pap smear results, he could not find the patients for further diagnostics, counseling, and treatment.

Certainly, other government-funded programs attempt to mitigate these challenges and improve access. In 2010, for example, the Government of India approved the National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases & Stroke (NPCDCS). The broad objectives of the NPCDCS are to: prevent NCDs through behavioral changes, promote early diagnosis of NCDs, train doctors and other health staff to monitor and treat NCDs, and establish and strengthen palliative and rehabilitative care facilities. Notably, the program strengthens existing public health infrastructure established through the National Rural Health Mission to reach even those populations residing in remote areas. The central government aims to scale up the NPCDCS, which has thus far been implemented in only 100 districts, to cover the whole country by 2017.

Flickr / DFID - UK Department for International DevelopmentBut whether or not even this program will facilitate UHC depends on how it links to existing state-funded insurance schemes. From my conversations, it became clear that at the moment, the NCPCDS and RAS seem entirely disconnected.

Because cancer is a chronic disease that requires preventative, screening, diagnostic, treatment, palliative, and rehabilitative services, investigation of cancer control policies provides some insight into the extent to which states have achieved UHC in practice. RAS has certainly improved the poor’s access to inpatient care, but we must be critical of such health financing mechanisms in order to improve their efficiency. The point of this series of posts is that pouring money solely into tertiary care may not be sufficient to improve financial protection, let alone increase quality and quantity of life, reduce the disease burden, and ultimately achieve UHC. We must aim to design programs that truly minimize supply side barriers to all health services and innovate to address such demand side barriers as cultural stigmas. Only then can we truly realize universal health coverage as defined by access rather than merely eligibility.

-

Pooja Yerramilli completed her B.A. at Yale University and MSc. at the London School of Hygiene and Tropical Medicine and the London School of Economics. She has been involved in cancer advocacy efforts for several years, and was an active participant in policy discussions regarding smoking behaviors and insurance coverage of smoking cessation treatments at Yale. She recently worked with the Indian Institute of Public Health and is currently collaborating with the Harvard Global Equity Initiative to research the financing of cancer care and control in low and middle income countries.

Category: Pooja | 3 Comments

Differently Abled, Not Disabled

In time for International Day of People with Disability this week, London School of Economics and Yale graduate Pooja Yerramilli returns to discuss the importance of disability inclusive development and innovative partnerships to empower persons with disabilities worldwide.

“I am very happy. I stand on my own feet – but it was not always this way,” twenty-six year old Mohammad Rafiuddin told me. Rafiuddin is a Hindi language trainer at Tata Business Support Services Ltd (TBSS) in Andhra Pradesh, India. As his family’s sole wage earner, he uses his annual salary of Rs. 180,000 (US$ 3280) to support his elderly parents. Few would guess that only three years ago, this confident young man was unemployed, depressed, and frustrated with a society that defined him not by his personality or skills but by his crutches.

Rafiuddin was only ten months old when he was diagnosed with polio. His family lived below the poverty line and relied on the sole income of his now retired father, an agricultural worker. They could not afford special equipment or assistance to ease Rafiuddin’s physical struggles. Neither did their village have the infrastructure and transportation services to help persons with disabilities (PwDs). So when Rafiuddin reached childhood, he had no option but to crawl one kilometer to and from school. Against all odds, Rafiuddin earned a B.A. and a B.Ed.

Yet, Rafiuddin soon faced a harsh realization that so many other PwDs share – that he was more crippled by society’s attitudes than by the impairment of his legs. He applied for jobs at ninety schools in his district. Even with his academic qualifications, he was turned away from every single one. “They looked at my disability, not my skills,” Rafiuddin says.

Rafiuddin’s story of struggle is not unique; however, his story of ultimate success is.  According to the World Bank, India has between 40 and 90 million PwDs. The 2002 National Sample Survey Office estimates that the majority of India’s PwDs are illiterate, and only one in four are employed. Further, the UN Development Programme estimates that 80% of PwDs reside in low and middle-income countries. These statistics reflect the cycle between disability and poverty. Namely, poverty increases susceptibility to such disabling conditions as malnutrition, while the stigma associated with disability precludes access to education and employment.

Ban Ki-Moon, Secretary-General of the United Nations, addresses the General Assembly's high-level meeting on "The way forward: a disability inclusive development agenda towards 2015 and beyond."

Ban Ki-Moon, Secretary-General of the United Nations, addresses the General Assembly’s high-level meeting on “The way forward: a disability inclusive development agenda towards 2015 and beyond.”

According to the UN, PwDs constitute the “largest and most disadvantaged group” in the world. Yet the rights and empowerment of PwDs have long been neglected. The Millennium Development Goals make no mention of disability. As a result, according to the International Disability and Development Consortium, PwDs are often left out of development initiatives. Programs to increase school attendance do not accommodate the needs of disabled children, and projects to improve access to water do not consider the physical barriers that PwDs encounter. These challenges are the focus of this year’s International Day of Persons with Disabilities. On December 3, the UN will promote the theme of “Break Barriers, Open Doors: for an inclusive society and development for all.” As Secretary General Ban Ki-moon stressed at the UN High-Level Meeting on Disability and Development in September, “we must not only lift the physical barriers, but also the barriers in attitudes that fuel stigma and discrimination.”

But how exactly can we go about this complex task? Meera Shenoy, founder of the Center for Persons with Disabilities Livelihoods (CPDL) in Andhra Pradesh, believes that in order to break the poverty cycle, society’s conception of disability must change. “Many disability NGOs,” she argues, “focus on the rehabilitation of persons with disabilities, but do not address the fundamental socioeconomic challenges that persons with disabilities face.” To address this need, Shenoy established the CPDL, a public-private partnership with private companies, a private sector foundation (Youth4Jobs), and the government of Andhra Pradesh.

The generic education that many PwDs receive in school does not adequately prepare them for the realities of a competitive job market. CPDL takes an innovative multisectoral approach and unites NGOs, companies, and the government on a single platform – the education and empowerment of young disabled adults. The organization teaches these youth practical skills to prepare them for specific jobs in service and manufacturing. Such partner companies as McDonalds and TBSS recruit from this pool of workers. In this manner, CPDL secured employment for approximately 70% of the 2800 youth trained through its programs.

Shenoy submits that “these youth transform themselves and their societies when they begin sending money to the same families that previously saw them as burdens. They show their peers that they are not disabled, but merely differently abled.” CPDL’s work has also helped improve perceptions of PwDs among employers. “There are many companies that cannot employ PwDs because the jobs require physical labor,” a partner company’s HR manager concedes. “But where we can take them, where they can work, we should employ them. We have a responsibility to put them in jobs where they can use their skills.”

Disability Rights Advocates rally in Washington DC to urge Senators to ratify the UN's Convention On The Rights Of Persons With Disabilities

Disability Rights Advocates rally in Washington DC to urge Senators to ratify the UN’s Convention On The Rights Of Persons With Disabilities

CPDL’s success shows that the world’s “most disadvantaged group” can indeed participate in the global economy. Thus, it is crucial that we prioritize the needs of the disabled particularly in developing countries, both in rhetoric and in action. As a first step, the United States Senate must ratify the UN’s Convention on the Rights of Persons with Disabilities. The treaty does not, as opponents believe, curtail national sovereignty, but merely promotes the international re-conceptualization of PwDs from individuals who require charity to productive members of society entitled to fundamental human rights. The impact that such a revised framework has already made is evident in the hopes and dreams instilled in CPDL’s students. “My ambition is to establish an NGO for the people who are affected by disabilities,” Rafiuddin says. “I want to collect those people and train them – and give them better opportunities, like me.”

-

Pooja Yerramilli is a Yale graduate and completed the MSc. Health Policy, Planning, and Financing degree at the London School of Hygiene and Tropical Medicine and the London School of Economics. She has been involved in cancer advocacy efforts for several years, and was an active participant in policy discussions regarding smoking behaviors and insurance coverage of smoking cessation treatments at Yale. She recently worked with the Indian Institute of Public Health and is collaborating with the Harvard Global Equity Initiative on research on the Financing of Cancer Care and Control in Low and Middle Income Countries.

Category: Pooja, Uncategorized | Tagged , , , , | 2 Comments

Cancer Prevention Strategies: The Need for Multidisciplinary Research

This week, London School of Economics and Yale graduate Pooja Yerramilli returns to explore the role and need for multidisciplinary approaches to global health and cancer research.

It is no secret that over half of all cancer deaths in low and middle-income countries (LMICs) are preventable or avoidable. Primary and secondary prevention have long been advocated as cost-effective means for controlling cancer. And, as Kuguru, et. al. rightly point out, our moral imperative to prioritize prevention efforts stems in part from the fact that cancers that should be avertible or treatable often become terminal when reported in late stages. Indeed, the most prevalent cancers in India fall into this category. Lung and oral cancers are preventable by risk factor (tobacco), as is cervical cancer (HPV infection). Moreover, cervical and breast cancers may be “curable” through such treatments as surgery, if detected early. Yet these four cancers together constituted almost 40% of all cancer cases and approximately 36% of all cancer deaths in India in 2008. These trends are consistent with numerous reports from the Indian state of Andhra Pradesh, which reaffirm that 75-80% of cancer cases treated through the Rajeev Aarogyasri Scheme (RAS) are diagnosed in advanced stages and therefore face lower survival rates.

The need to focus attention on mass prevention seems obvious, begging the question: why haven’t LMICs already effectively done it? As part of my research on the financing of cancer care and control in Andhra Pradesh, I investigated this question.

A review of legislation in India suggests that the central government has in fact long prioritized cancer prevention. In 1975, the government established the National Cancer Control Programme (NCCP), and shifted the program’s focus toward primary and secondary prevention in 1984. However, my conversations with government officials and health care providers indicated that cancer prevention strategies are inadequate on paper and even more inadequate in practice, due to myriad economic, social, and political factors. These discussions revealed that we cannot merely say “cancer prevention” is the most cost-effective means of controlling cancer, but must develop and identify specific prevention strategies that are the most cost-effective in LMICs. As two key informants detailed, cervical cancer screening methods are a prime example of the need and promise of such interdisciplinary research.

Pap smears have long been accepted in many high-income countries as an effective screening method for pre-cancers. Unfortunately, according to several oncologists I interviewed, mass screening programs which include Pap smears are nonexistent in Andhra Pradesh. The inaccessibility of screening may in part be attributed to inadequate infrastructure as well as social, cultural, and economic barriers.

In India, Pap smears are commonly seen as overly invasive and embarrassing. A woman who seeks a Pap smear is presumed to engage in sexual activity, which in India, is rarely openly discussed. This stigma not only discourages women from seeking Pap smears, but also affects the design of preventative programs. As many oncologists suggested, prevention efforts in Andhra Pradesh remain piecemeal, and are largely funded by independent charitable organizations and individuals. Several physicians confirmed that when they conduct health camps, they target married women for Pap smears, thus operating within the cultural stigma and insistence that only this cohort is at risk for developing cervical cancer. And because women must simultaneously work, manage household chores, and look after children, they seldom visit health camps or clinics until they can no longer ignore their symptoms. Thus, despite the efforts of many hospitals to raise awareness of pre-cancerous symptoms, Pap smear delivery rates remain low. As one study confirms, non-compliance and community participation are of primary concern when designing cervical cancer screening programs.

Even if these health care providers’ efforts to target symptomatic women were successful, several oncologists agreed that their initiatives could not truly qualify as screening. Screening by definition must entail the investigation of both symptomatic and asymptomatic individuals. Yet, according to one physician, in a country as large as India, the scaling up of Pap smears to cover the entire population may be financially infeasible.

Indian vinegar test for cervical cancer could save women worldwide (Flickr Creative Commons Image).

These limitations seem to suggest that comprehensive and consistent cervical cancer prevention efforts in Andhra Pradesh are simply futile. However, recent research may provide alternative solutions. Several studies have compared the effectiveness of Pap smears with those of the recently innovated visual inspection with acetic acid (VIA) method and HPV DNA test in communities in Andhra Pradesh (and other LMICs). HPV DNA tests in particular may not only be more sensitive and specific than Pap smears, but also may reduce reliance on infrastructure and specialists. Therefore, such methods as self-collected HPV DNA tests may prove most suitable to regions such as Andhra Pradesh, which have inconsistent health infrastructure and a population reluctant to seek invasive tests at clinics due to cultural taboos.

Research currently under way is investigating the cost-effectiveness of these cervical cancer screening methods, to determine which are most scalable in resource-limited settings. The vast infrastructural, social, cultural, and economic barriers to access seem daunting, but multidisciplinary research may minimize some of these challenges and thereby improve health care delivery. The collaboration of researchers across such disciplines as biomedical sciences and health economics may facilitate the development of novel disease control methods while we also tackle the long term and fundamental health systems challenges that preclude consistent access to services across the cancer care and control continuum.

-

Pooja Yerramilli is a Yale graduate and MSc. candidate at the London School of Hygiene and Tropical Medicine and the London School of Economics. She has been involved in cancer advocacy efforts for several years, and was an active participant in policy discussions regarding smoking behaviors and insurance coverage of smoking cessation treatments at Yale. She recently worked with the Indian Institute of Public Health to complete a research project on the Financing of Cancer Care and Control in India.

Category: Pooja | 4 Comments

Is Financial Protection for Cancer Enough?

Saying that cancer is an expensive disease is an understatement, particularly in such low and middle income countries (LMICs) as India. According to estimates from 2004, one inpatient admission for cancer in India can cost 40-50% and 80-90% of annual per capita income in public and private hospitals, respectively. Given that cancer is a chronic disease, often requiring multiple admissions, it’s no wonder that over 45% of families with one cancer patient face catastrophic expenditures and 25% are pushed below the poverty line (BPL). To put this in perspective, the likelihood of catastrophic expenditures is 160% higher for cancer than for communicable diseases in India. On top of these direct medical expenses, cancer patients also face unaffordable and indirect costs of transportation and loss of daily wages.

Aarogyasri Health Care Trust in Hyderabad, Andhra Pradesh

Aarogyasri Health Care Trust in Hyderabad, Andhra Pradesh

These alarming statistics, and the fact that NCDs including cancer are the leading cause of death in India, have encouraged individual Indian states to devise insurance schemes that increase financial protection for the poor. Andhra Pradesh, a state in south India, aims to alleviate this financial burden through the tax-funded Rajiv Aarogyasri Scheme (RAS). The primary objective is to improve the poor’s access to quality treatments for a specific list of diseases. The state government recognized that public hospitals alone cannot achieve this goal, due to staff and supply shortages, and low quality standards. On the other hand, private hospitals, initially only accessible to the rich, are well equipped and staffed to provide specialist services. Thus, RAS empanels and funds tertiary care in both private and public hospitals using tax revenues.

RAS, in many ways, seems too good to be true. The scheme provides completely cashless tertiary care – including transportation, food, investigations, and therapies – for BPL families, which apparently constitute 87% of the state’s population. Among the treatments covered are medical, surgical, and radiation oncology. Since its inception in 2007, RAS has covered approximately two million surgeries and therapies. Due to its apparent success, RAS has received international accolade as an innovative public-private partnership (PPP) which has promoted access to good quality healthcare.

Yet recently, the cost-effectiveness of the scheme has been called into question. Every year, approximately 20% of RAS therapies are related to cancer, but whether this money is being used in the most efficient manner is unknown. In an effort to answer this question, I talked with state government officials and oncologists in both public and private hospitals and attempted to learn from their experiences and opinions on cancer policies in the state.

From these key informant interviews, two major flaws in cancer care and control (CCC) efforts became immediately clear: the absence of consistent prevention efforts and inability to follow up with patients. Every single provider I talked with lamented the fact that the majority of cancer patients they see are diagnosed at late stages. Often, due to metastasis and complications, treatments become less effective at advanced stages of the disease. But because a life is a life, these doctors end up performing procedures that are reimbursed through RAS and will likely have little effect in extending or improving quality of life. As the key informants suggested, the problem is that the overly siloed approach toward financial protection for treatment has left gaping inadequacies in access to prevention and screening. And the most common cancers in India happen to be preventable through behavioral change (tobacco-related lung and oral cancers) and treatable if detected early (cervical and breast cancers). So essentially, many cancer patients may be needlessly suffering and the state government may be needlessly spending money on treatments that may not even be efficacious after all. And, to make matters worse, many informants asserted that after treatment, the majority of patients are lost to follow up – providers cannot track and determine whether the patient is “cured,” faces recurrence, or dies.

The point is, while RAS is certainly increasing access to treatment, a sole focus on tertiary care may not be economically justifiable. According to the key informants, we must recognize that the relationship between cancer and poverty is not one-way, but cyclical. The poor may face a higher incidence of cancer due to socioeconomic differentials in risk factor exposure, such as tobacco consumption. Moreover, cancer is often diagnosed at late stages due to inadequate diagnostic infrastructure, particularly in rural regions, where the majority of BPL individuals reside. These patterns confirm that poverty increases risk and severity of cancer and cancer further entrenches families in poverty.

This is the first of a series of posts that will delineate the main health systems challenges that must be overcome in providing comprehensive CCC, even with such an innovative insurance scheme as RAS. These discussions will show that CCC is inherently tied to the movements toward Universal Health Coverage, which, according to the World Health Assembly, entail two main goals: “to provide all people with access to needed health services (including prevention, promotion, treatment and rehabilitation) of sufficient quality to be effective; and ensure that the use of these services does not expose the user to financial hardship.” Currently, the state of Andhra Pradesh is focusing on the second aim, but is hopefully in the process of shifting its attention in order to break, or at least weaken, the cycle of impoverishment.

-

Pooja Yerramilli is a Yale graduate and MSc. candidate at the London School of Hygiene and Tropical Medicine and the London School of Economics. She has been involved in cancer advocacy efforts for several years, and was an active participant in policy discussions regarding smoking behaviors and insurance coverage of smoking cessation treatments at Yale. She recently worked with the Indian Institute of Public Health to complete a research project on the Financing of Cancer Care and Control in India.

Category: Uncategorized | Tagged , , | 30 Comments