Empowering Voices: Strengthening Patient Advocacy in India

By Arunima Rajan

Counting patients as important stakeholders and involving them in treatment decisions can lead to better health outcomes.

India, with its billion-plus population, is a juggler performing the world's most critical act: healthcare. But our health system, already juggling a dizzying array of balls, often fumbles on one: patient advocacy. Imagine yourself in a marketplace haggling over potatoes and onions. Now replace that marketplace with a hospital and the vegetables with medical procedures. Terrifying thought? For many in our country, this is the harsh reality, with healthcare costs an one-way ticket to financial ruin.

It gets worse. Quality of life, post-treatment, isn't equal either. Indian diversity isn't just about cultures or cuisines; it’s also about disparity. Your geographical address and bank balance can decide whether you recuperate in a clean, comfortable bed or on a bare, cold floor.

It's time we amplified patient voices in our policy-making corridors. That's how we bridge the chasm between what healthcare is and what it should be. Amping up patient advocacy isn't just about redefining healthcare protocols, it’s about affirming our commitment to human dignity. We're not just striving for a healthier India, but a future where every citizen enjoys good health with respect.

A recent Oxfam India survey revealed 25% of Indians faced discrimination when seeking healthcare, due to religion or caste, highlighting issues with the Patients' Rights and Vaccine Policies. A significant 58% of respondents claimed they were not given an estimated treatment cost, while 31% were denied access to case papers and medical records. For vaccinations, despite government assurances of non-discrimination, 74% of respondents earning under INR 10,000 per month felt uninformed about the vaccination process. Oxfam India's CEO, Amitabh Behar, urged immediate adoption of the Patients' Rights Charter and more transparency in vaccinations, emphasising the need for a stronger public health system and greater regulation of the private health sector.

Consider the journey of Manjit Singh, President of the Lysosomal Storage Disorders Support Society (LSDSS). Faced with the profound grief of losing both sons to rare diseases, Manjit transformed his personal loss into hope, becoming a lifeline for children across the nation with similar health challenges.

Manjit's advocacy has brought rare diseases into the spotlight and extended support to families caught in similar storms. His experiences remind us that constructing a more inclusive, efficient, and compassionate healthcare framework in India calls for the integration of patient perspectives into policy-making. It's not just about changing systems but changing lives.

Enhancing Patient Rights

The inception of LSDSS initiated in 2006 and formalised in 2010, marked the arrival of a trailblazing patient advocacy group determined to shine a light on Lysosomal Storage Disorders and improve health outcomes. These disorders posed significant challenges, including a lack of treatment options in 1995.

Progress has since been made, with the first treatment surfacing in 1999. “In India, approximately 1,000 of the suspected 20,000 Lysosomal Storage Disorders (LSD) patients are identified. Medical institutions and advocacy groups are increasing their efforts for better understanding, diagnosis, and treatment. Of our LSDSS members, which consist of 550 children, our focus is on prevention through counselling and prenatal testing. Despite the existence of over 4,000 rare diseases, with only about 350 known and less than 40 treated, our mission's importance is paramount. Our work at LSDSS is aimed at treatment, prevention, and boosting awareness,” says Manjit Singh.

Increasing Transparency in Healthcare

He adds that the primary challenge in treating LSD is the enormous cost of Enzyme Replacement Therapies, mainly developed by US companies. “These treatments, approved by the FDA, replace missing proteins but can cost up to INR 2.5 crores for a 45 kg patient. With no government support or insurance coverage, the high cost often renders these treatments inaccessible. However, some pharmaceutical companies, through humanitarian aid programs, provide free medicines to selected patients. Advocacy groups like ours play a key role in facilitating this,” he explains.

Promoting Patient-Friendly Legislation

He continues, "Patient advocacy groups like ours paved the way for humanitarian aid programs, transforming lives like a Gaucher disease patient who's now an engineer. Indian public sector units, including Armed Forces and other state departments, have pledged treatment support. Our coordinators and genetic physicians provide vital support across states. We're advocating for legislation to channel Corporate Social Responsibility funds and cigarette cess to rare diseases, while also pushing for local biosimilar production, requiring simpler governmental policies. While we helped shape the 2021 National Policy on Rare Diseases, more funding is needed for better implementation and diagnosis."

The Role of Parent Support Groups

Rett Syndrome, a rare genetic disorder mainly affecting girls, is caused by a mutation in the MECP2 gene on the X chromosome. Symptoms appear around six months and include slowed growth, loss of motor and communication abilities, and unusual hand movements. Individuals with Rett Syndrome, often known as 'Silent Angels', experience progressive motor and language loss, requiring a multi-disciplinary care team to manage comorbidities like seizures, breathing issues, scoliosis, cognitive impairment, and sleep disorders. Interestingly, they often have strikingly beautiful and sharp features.

A Rett Syndrome diagnosis can leave families devastated and hopeless. In this challenging situation, Parent Support Groups (PSGs) provide an essential lifeline. They offer understanding and empathy, and also practical guidance, sharing experiences and management strategies. PSGs foster community, offering reassurance in shared struggles and achievements, and enable the collective pursuit of new treatments. However, the financial burden of the disease can be overwhelming, leading to burnout. PSGs work to mitigate this, providing free medication needed, coordinating medical care, and organising social events for families. They liaise with governmental bodies for insurance cover and to raise awareness, inviting medical specialists to provide consultations and support.

Policy Change

The National Policy for Rare Diseases, 2021, marks a step forward for India's rare disease patients, though challenges remain. A precise definition of 'Rare Diseases' and a detailed study of their prevalence and nature are

necessary for better policy implementation and research guidance. Collaborations with international drug developers and fostering indigenous drug production could ensure timely, affordable access to innovative treatments. Considering 80% of rare diseases have genetic origins, preventive measures such as genetic testing and awareness are crucial. While only 5% of rare diseases have definitive treatments, the policy should focus on supportive care, rehabilitation, and financial aid for the larger patient group. This will ensure comprehensive and inclusive care for all rare disease patients.

Samir Sethi, the head of Indian Rett Syndrome Foundation, said they have been advocating for clinical trials for Rett Syndrome-specific drugs. They are also encouraging global pharma companies to include Indian patients in clinical trials and drug development programs. Additionally, they have organised conferences and workshops to rally researchers and pharmaceutical companies to develop drugs and therapies for rare diseases. Sethi acknowledged the challenges are numerous, but the commitment of the PSG and Patient Advocacy Group is unwavering.

The Fernandez Foundation is a patient advocacy group in India, dedicated to improving maternal and newborn care through accessible healthcare, patient education, defence of patient rights, and contributions to national healthcare policy reform. The foundation bolsters patient advocacy by advocating for midwifery in maternal care and championing mother's own milk (MOM) for new-borns.

“Our mission to improve maternity care involves recognizing the essential role of fathers during pregnancy and birth. We initiated a program that empowers fathers to be more involved in the childbirth experience. One touching incident that stands out is when a father of premature twins eagerly offered Kangaroo care to one of his babies, with the other baby nestled on his chest. This reinforced our belief in involving both parents in the pregnancy and birth process,” says Evita Fernandez, Chairperson of Fernandez Foundation, showing how insights and advocacy from patients and their communities helps broaden the scope of healthcare

The Bigger Picture: Community Involvement in Health Policy

Community involvement in health policy-making can ensure that patient voices are heard and considered. "Tuberculosis treatment, which can span from six months to two years, demands significant patient involvement in their care decisions. This is not just a question of medical protocol - it's a question of bodily autonomy, strikingly akin to the discussions we have around female bodily autonomy," says Ashna Ashesh, a public health professional, lawyer and MDR TB Survivor. "Affected community engagement is integral to successfully containing this infectious disease. It's not merely about compliance but about person-centred care."

Ashesh adds, "Consider a comparison with product design- if a product intended for women is designed without consulting any women, it's likely to fail in the market. The stakes are even higher in healthcare; it's not merely about financial loss, but about human lives. It's critical that survivors have not just a seat at the table but also the influence to make decisions that directly impact their lives and wellbeing."

"As a survivor and a public health professional, I can testify that affected community involvement isn’t limited to policy formation. We're problem-solvers,facilitating access to essential medications, providing peer support, and helping patients navigate the healthcare system.

We're also skilled professionals who can significantly contribute to public healthcare. While TB is a deadly disease, it's curable with early detection and appropriate treatment. But it's not just about physical health; the disease takes a significant psychological toll. The stigma associated with TB, the lifestyle changes, and the side effects of medication can all severely impact mental health. I've experienced this firsthand. During my treatment, my doctor recommended temporarily pausing my medication due to its effect on my mental health. It was a critical reminder that quality of life should be at the heart of treatment, not just compliance. It is crucial to acknowledge TB and mental health as comorbidities and address them as such in our healthcare policies and practices," concludes Ashesh.

Clearly, patient advocacy is not just about supporting patients in their healthcare journey. It's about co-creating a healthcare system with affected communities where patients are heard, their rights protected, and their health needs met. By strengthening patient advocacy, we are not just improving individual health outcomes but transforming the Indian healthcare system as a whole.