Empowering Futures: Advocacy Unleashed in Government Schemes at The Cancer Conclave 2024 by UHAPO

Let me invite Mr. Sanjeev Sharma, who is the CEO of Utsaah Foundation and founder of Lung Connect India, Dr. Kunal Oswal is the Lead of Screening and Early Detection at Karkinos Healthcare, Dr. Rushabh Kothari – Medical Oncologist at Ahmedabad, Mr. James Rajakumar, AVP at NATCO Pharma, Dr. Chitra Gupta – Lead Patient Advocacy at Pfizer.

I welcome you all to the panel and thank you so much for being here and contributing to the cause.

Let me start with Dr. Rushabh. We will address public-private partnerships for the development of Advocates in Cancer Care to enhance access.

How is the implementation of the public-private partnership model? 

Pmjay Yojana helps a lot of patients. If these schemes were not available I do believe that around 40-50% of patients would not have come forward to receive the treatment. There are some real challenges as We don’t need Pmjay services but it will cover investigations needed to diagnose. 

It is not just chemotherapy, surgery or radiation to be done. It involves a lot of supportive care along with the need for nutritional supplementation. You need psychological and palliative care advice and all of this is not covered in the Aayushman Yojana. 

For any molecule once the patent is over. Our country will come up with cheaper molecules, and cheaper generics that can be catered in Ayushman. For clinicians, we had to understand we had a drug for breast cancer which was 5000 in January but after one year of its availability, it is still not present in Aayushman. It delays the use of chemotherapy and immunotherapy in breast cancer patients by also improving the quality of life for patients with an increase in survival rate. The revision of Ayushman packages is not happening plus it also does not cover malignancies. 

It is largely for general populations but if cheaper medicines are available in Aayushman Yojana it will be of great help to the patients. 

The second perspective is hospitals that are largely dependent on Aayushman Yojana. The cash flow is very tough to overlook as hospitals find it difficult to provide treatment for Aayushman Yojana. 

Let me ask Mr. Sanjeev Sharma – CEO of Utsaah Foundation, What is your opinion on this challenge?

The implementation of the public-private partnership (PPP) model in cancer care has shown promising results in various contexts around the world. Here are some key aspects of how this model is implemented and its impacts –

• Enhanced Access to Care: PPPs can improve access to cancer care by leveraging the resources and expertise of both public and private sectors. This collaboration can lead to the development of new facilities, equipment, and specialized services in underserved areas.
• Improved Service Delivery: By combining the strengths of public institutions (such as government funding and infrastructure) with the efficiency and innovation of private entities (such as technology and management practices), PPPs can enhance the delivery of cancer care services. This may include reducing waiting times, increasing treatment options, and enhancing overall patient experience.
• Innovation and Technology: Private sector involvement often brings innovation and technology upgrades to cancer care facilities. This can lead to the adoption of state-of-the-art diagnostic tools, treatment modalities, and management systems, resulting in better outcomes for patients.
• Financial Sustainability: PPPs can help alleviate the financial burden on governments by attracting private investment in cancer care infrastructure and services. This can lead to more sustainable healthcare systems, where costs are shared between public and private partners.
• Capacity Building: Collaborative efforts between public and private entities can facilitate capacity-building initiatives such as staff training, knowledge exchange programs, and skill development workshops. This can strengthen the overall healthcare workforce and improve the quality of cancer care delivery.
• Community Engagement: PPPs often involve community engagement initiatives aimed at raising awareness about cancer prevention, early detection, and treatment options. By partnering with local organizations and stakeholders, PPPs can tailor their services to meet the specific needs of the communities they serve.
• Monitoring and Evaluation: Effective monitoring and evaluation mechanisms are essential for assessing the impact of PPPs on cancer care outcomes. Regular reviews of performance metrics, patient satisfaction surveys, and clinical audits help identify areas for improvement and ensure accountability among partners.

What are the cancer treatment challenges, What are the roadblocks in the process, and Do you think patient advocacy groups can play any role?

Cancer treatment faces numerous challenges, ranging from scientific and technical hurdles to systemic and socio-economic barriers. Here are some of the key challenges and roadblocks in the cancer treatment process, along with the potential role of patient advocacy groups –

• Access to Treatment: One of the most significant challenges in cancer treatment is ensuring equitable access to high-quality care for all patients, regardless of their socio-economic status, geographic location, or insurance coverage. Many patients face barriers to accessing essential cancer treatments, including chemotherapy, radiation therapy, surgery, and targeted therapies, due to factors such as financial constraints, lack of health insurance, limited healthcare infrastructure, and long waiting times for appointments or procedures.
• Cost of Treatment: Cancer treatment can be prohibitively expensive, placing a significant financial burden on patients and their families. The cost of medications, diagnostic tests, hospitalization, and supportive care services can quickly accumulate, leading to financial hardship and potential treatment delays or interruptions. High out-of-pocket expenses and limited insurance coverage can exacerbate disparities in access to care and contribute to treatment non-adherence or discontinuation.
• Complexity of Treatment Decisions: Cancer treatment decisions are often complex and multifaceted, involving considerations such as disease stage, tumor biology, patient preferences, co-morbidities, and treatment goals. Oncologists must navigate a vast array of treatment options, each with its own benefits, risks, and potential side effects, while also considering individual patient factors and preferences. This complexity can pose challenges in decision-making and may result in uncertainty or variability in treatment approaches across healthcare providers.
• Emerging Drug Resistance: Cancer cells can develop resistance to chemotherapy, targeted therapies, and immunotherapies over time, leading to treatment failure and disease progression. Mechanisms of drug resistance are complex and multifactorial, involving genetic mutations, tumor heterogeneity, microenvironmental factors, and adaptive cellular responses. Overcoming drug resistance remains a significant challenge in cancer treatment and requires ongoing research efforts to develop innovative therapeutic strategies and combination approaches.
• Psychosocial and Supportive Care Needs: Cancer patients face a myriad of psychosocial and supportive care needs throughout their treatment journey, including managing physical symptoms, emotional distress, social isolation, financial stress, and existential concerns. Access to comprehensive supportive care services, such as palliative care, psychosocial counseling, pain management, and survivorship care, is essential to address these needs and optimize patient outcomes. However, many patients experience barriers to accessing supportive care services, including stigma, cultural beliefs, healthcare provider attitudes, and limited availability of specialized services.

• Healthcare Disparities and Inequities: Cancer disproportionately affects certain populations, including racial and ethnic minorities, low-income individuals, rural communities, and marginalized groups, who may experience higher cancer incidence, mortality, and disparities in access to care. Addressing healthcare disparities requires multifaceted interventions at the individual, community, and policy levels to promote health equity and ensure that all patients receive timely, appropriate, and culturally competent care.

Patient advocacy groups play a crucial role in addressing these challenges and advocating for the needs and rights of cancer patients and their families. Some ways in which patient advocacy groups can contribute include –

• Raising Awareness: Patient advocacy groups can raise awareness about cancer prevention, early detection, treatment options, and supportive care services through educational campaigns, community outreach events, and online resources.
• Advocating for Policy Change: Patient advocacy groups can advocate for policy changes at the local, national, and international levels to improve access to cancer care, increase funding for cancer research, expand insurance coverage, and address healthcare disparities. 
• Supporting Patient Navigation and Resources: Patient advocacy groups can provide practical support and resources to help patients navigate the complex healthcare system, access financial assistance programs, find clinical trials, locate support groups, and connect with peer mentors or survivors.
• Research and Innovation: Patient advocacy groups can collaborate with researchers, healthcare providers, industry partners, and funding agencies to advance cancer research, accelerate the development of new treatments, and improve patient outcomes. 
• Promoting Equity and Inclusion: Patient advocacy groups can advocate for policies and initiatives that promote health equity, diversity, and inclusion in cancer care, research, and policy-making.

How to overcome the stigma related to cancer?

Overcoming stigma related to cancer requires a multi-faceted approach that involves education, awareness, and empathy. Here are several strategies to address and reduce the stigma associated with cancer –

Promoting Early Detection and Prevention: Emphasizing the importance of early detection and prevention strategies can help reduce fear and stigma associated with late-stage cancer diagnoses. Promoting regular screenings, healthy lifestyle choices, and risk-reduction measures can empower individuals to take control of their health and reduce their risk of developing cancer.

• Education and Awareness: Providing accurate information about cancer, its causes, treatments, and outcomes can help dispel myths and misconceptions that contribute to stigma. Educational campaigns through various channels such as media, schools, workplaces, and community organizations can raise awareness and promote understanding of cancer as a medical condition.
• Open Dialogue: Encouraging open and honest conversations about cancer can help break down barriers and reduce stigma. Creating safe spaces where individuals affected by cancer can share their experiences without fear of judgment can foster empathy and support within communities.
• Empowering Language: Language plays a crucial role in shaping perceptions of cancer. Using respectful and empowering language that focuses on the person rather than the disease can help reduce stigma. Avoiding negative labels or stereotypes and instead emphasizing the individual’s strengths, resilience, and dignity can promote a more positive narrative around cancer.
• Challenging Stereotypes: Addressing stereotypes and misconceptions about cancer patients can help challenge stigma. Highlighting diverse stories and experiences of cancer survivors from different backgrounds, ages, and cultures can demonstrate the variability and complexity of the disease, thereby undermining simplistic stereotypes.
• Supportive Networks: Building supportive networks and communities for cancer patients, survivors, and their loved ones can provide a sense of belonging and reduce feelings of isolation and shame. Peer support groups, counseling services, and online forums can offer emotional support, practical advice, and validation of shared experiences.
• Policy and Advocacy: Advocating for policies and initiatives that protect the rights and dignity of cancer patients can help address systemic sources of stigma. This includes advocating for equal access to healthcare, anti-discrimination laws, workplace accommodations, and comprehensive support services for cancer patients and survivors.

The same question goes to Dr. Chitra Gupta – Lead Patient Advocacy at Pfizer. 

Absolutely, public-private partnerships (PPPs) are indeed crucial in enhancing access to cancer care, particularly for patients who may not be covered by existing healthcare schemes. Innovative access programs, such as patient assistance programs, play a vital role in ensuring that individuals facing financial barriers can still receive the necessary treatment and support they need. Here’s how these programs can help –

• Financial Assistance: Patient assistance programs provide financial support to individuals who are unable to afford the full cost of cancer treatment. This assistance can help cover expenses such as medication, chemotherapy, radiation therapy, surgeries, and supportive care services.
• Affordability: By subsidizing part of the cost of treatment, patient assistance programs make cancer care more affordable for patients, reducing the financial burden on them and their families. This ensures that individuals do not have to forgo essential treatment due to financial constraints.
• Improved Access: These programs help improve access to cancer services for underserved populations, including those who may not have health insurance coverage or who may be ineligible for government-funded healthcare schemes. By filling gaps in coverage, patient assistance programs ensure that no one is left behind due to financial barriers.
• Comprehensive Support: Patient assistance programs often offer more than just financial assistance. They may also provide additional support services such as counseling, transportation assistance, nutritional support, and access to support groups, addressing the holistic needs of cancer patients.
• Collaboration with Private Sector: By partnering with private companies and pharmaceutical manufacturers, patient assistance programs leverage resources from the private sector to support cancer patients. This collaboration allows companies to fulfill their corporate social responsibility goals while making a meaningful impact on patients’ lives.
• Customized Solutions: Patient assistance programs can tailor their support to meet the specific needs of individual patients, taking into account factors such as income level, type of cancer, stage of treatment, and available healthcare resources.
• Long-term Sustainability: While patient assistance programs provide immediate relief to patients, they also contribute to long-term sustainability by ensuring that individuals receive timely and appropriate treatment, which can lead to better health outcomes and reduced healthcare costs in the long run.

How Pharma companies and Patient advocacy can collaborate to provide benefits?

We aim to support patients in their therapy journey. Our company prioritizes patient needs, ensuring they understand their treatment process. We collaborate with various entities like Aayushaman, insurance, and patient advocacy groups for patient benefits. During the COVID-19 pandemic, we quickly set up a channel to address lung cancer patients’ issues. Recently, we launched a global platform based on surveys and input from over 25 countries and 170 patient advocates. We gathered their needs for capacity building. Patients share their needs, and we provide the necessary support. Courses have been designed and endorsed by patient advocates and experts in over 60 countries. Patient groups now have access to these services. We operate help desks in 14 hospitals and Centers of Excellence (COEs) worldwide. Our patient navigator tool has reached over 100,000 caregivers and 300,000 patients, as per October reports.

Quality of care is as crucial in the pharmaceutical industry, just as affordability is.

Striking the right balance between quality of care and affordability is essential for the pharmaceutical industry. While ensuring high standards of quality is paramount for patient safety and well-being, overly high drug prices can limit access to essential medications and undermine public health objectives.

It was wonderful speaking to you all on this crucial topic. And thank you all for devoting your time today. We keep giving, keep meeting, we keep discussing, and we keep evolving…

Now I would like to invite – Dr. Ratna Devi. She is a Director at ISPOR Patient Council. 

Today we have four panelists with me Dr. Arun Chandrashekharan who is a Medical Oncologist at Aster MIMS in Calicut Kerala, Mr. Jaikumar Mane- Medical Social Worker at Tata Memorial Hospital, Mumbai, Ms. Vandana Gupta – Founder, V Care

My first question is to Mr. Jaikumar Mane- a Medical Social Worker at Tata Memorial Hospital

What are the schemes available in your hospital and if some schemes are not available then what are the challenges?

The schemes available in our hospitals are – 

Aayushman Bharat Yojana (PMJAY): This scheme aims to provide health insurance coverage to economically vulnerable families for secondary and tertiary healthcare services. Hospitals may face challenges in the enrollment process, verification of eligible beneficiaries, and coordination with insurance agencies for reimbursement. Additionally, there may be issues related to inadequate infrastructure, shortage of healthcare providers, and delays in payments from insurance companies.

Mahatma Jana Aarogya Yojana: Similar to PMJAY, this scheme provides health insurance coverage to eligible families for hospitalization expenses. Hospitals may encounter challenges related to beneficiary identification, eligibility verification, and reimbursement procedures. Additionally, ensuring quality of care while managing increased patient volumes under the scheme can be a significant challenge for healthcare facilities.

Biju Swasthya Kalyan Yojana (BSKY): This scheme in Odisha provides cashless healthcare services to eligible beneficiaries. Hospitals may face challenges in integrating their systems with the BSKY portal for beneficiary verification and claim processing. Adequate infrastructure, availability of essential drugs and medical supplies, and skilled healthcare personnel are also essential for the successful implementation of the scheme.

Goa Medical Card Scheme: This scheme provides financial assistance to residents of Goa to avail medical treatment. Hospitals may encounter challenges in verifying the authenticity of medical cards, coordinating with government authorities for reimbursement, and ensuring the timely provision of services to beneficiaries. Adequate infrastructure, availability of specialist services, and effective referral mechanisms are crucial for the success of the scheme.

Challenges in implementing these schemes may include –

• Administrative Burden: Hospitals may face administrative challenges in enrolling beneficiaries, verifying eligibility criteria, and processing claims under government healthcare schemes. This can lead to delays in patient care and reimbursement, as well as increased administrative workload for hospital staff.
• Financial Constraints: Government healthcare schemes often involve reimbursement mechanisms that may not fully cover the costs incurred by hospitals for providing services to beneficiaries. This can strain hospital finances and impact the quality and availability of healthcare services.
• Infrastructure and Capacity: Hospitals may lack adequate infrastructure, equipment, and skilled personnel to meet the increased demand for services under government healthcare schemes. This can result in overcrowding, long waiting times, and compromised quality of care for beneficiaries.
• Coordination and Communication: Effective coordination and communication between hospitals, government agencies, insurance providers, and beneficiaries are essential for the successful implementation of healthcare schemes. Lack of coordination can lead to confusion, delays, and inefficiencies in service delivery.

Next question is to Dr. Arun Chandrashekharan who is a Medical Oncologist at Aster MIMS in Calicut Kerala

As an oncologist or physician, what challenges do you face when patients come who are eligible for government schemes but do not receive complete treatment?

I work in the corporate sector in Kerala, and here we don’t have government schemes. However, we do offer insurance through Medicap for government officers, ESI, and ECHS.

In ESI and ECHS, all treatments are covered, but with Medicap, we only have chemotherapy and radiation covered. Unfortunately, surgeries like rectal cancer, which require all three treatment modalities, are not covered. In such cases, we offer Aster Foundation financial rates, which reduce the cost of treatment by 30-40% for eligible patients.

Do you think new and advanced applications need to be included in government schemes?

Yes, including new and advanced applications in government schemes for cancer patients is essential to ensure that patients have access to the latest and most effective treatments available. Here are several reasons why –

• Access to Innovative Treatments
• Improving Treatment Outcomes
• Reducing Health Disparities
• Promoting Research and Development
• Cost-Effectiveness and Value-Based Care

Incorporating new and advanced applications in government schemes for cancer patients is essential to ensure equitable access to innovative treatments, improve treatment outcomes, reduce health disparities, promote research and development, and enhance cost-effectiveness in cancer care delivery. By prioritizing the inclusion of these treatments in government healthcare programs, policymakers can make significant strides in advancing cancer care and improving the lives of patients affected by the disease.

The next question is to Mr. Jaikumar Mane- Medical Social Worker at Tata Memorial Hospital, Mumbai.

We have 29 states in our country and considering every state has patient groups what message you will provide them?

We understand that accessing quality healthcare, especially for serious illnesses like cancer, can be challenging for many individuals and families across India. Therefore, we urge you to continue our efforts in supporting patients and their families by providing them with vital information, and emotional support, and advocating for their rights within the healthcare system.

Here are some key messages and actions that we consider –

Screening and Early Detection: Encourage individuals to undergo regular screenings for early detection of cancer. Organize awareness campaigns, health camps, and educational sessions to promote the importance of screening and early diagnosis.

Support for Tata Hospitals and Local Healthcare Facilities: Appreciate the efforts of institutions like Tata Hospitals in providing high-quality cancer care. Advocate for the establishment of more branches or satellite centers of such renowned institutions in different states to ensure that local communities have access to specialized cancer treatment and expertise.

Accessing Hospital Funds: Explore opportunities for patients to access hospital funds or financial assistance programs to help alleviate the financial burden of cancer treatment. Work closely with healthcare providers, social workers, and government agencies to identify available resources and facilitate the process of accessing funds for eligible patients.

Thank you so much….

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