Unlocking Hope and Healing: Key Takeaways from The Cancer Conclave 2024 on Advocacy and Insurance Empowerment

Thank you, Vivek, Uhapo, and the CRSF Foundation. Today I am honored to moderate experts in the field. Our panelists for today are Ms. Deepti Bhaskara, Head of Strategic Initiatives, Clinikk Healthcare, Dr. Kumar Prabhash, Professor – of Medical Oncology, Tata Memorial Hospital, Mumbai, Dr. Maulik Chokshi, Deputy Country Director – Access Health International, Dr. S. Prakash, Former MD – Star Health, Dr. Sameer Bakshi – Medical Oncologist, AIIMS, Delhi, Dr. Vijay Sankaran, Group CMO-Mediassist.

So, I will start my question with Dr. Kumar Prabhash, so with your extensive experience as a Medical oncologist – 

What are the major problems faced by clinicians while treating cancer from an insurance perspective? 

Cancer care is highly stochastic as there are many complications arising during treatment, do you think the current insurance cover addresses them?

Treating cancer from an insurance perspective presents numerous challenges for clinicians, patients, and healthcare providers alike. Here are some major problems faced by clinicians in this regard –

• Determining Optimal Insurance Coverage: Clinicians often face the challenge of determining which insurance plans will provide the most comprehensive coverage for their patients over the long term. This involves navigating complex insurance policies, understanding coverage limitations, and anticipating potential gaps in coverage that may arise during the course of cancer treatment.
• Limited Coverage for Innovative Treatments: In fields like Neurotherapy, where innovative treatments may not have been available or widely recognized twenty years ago, insurance coverage can be particularly limited. Clinicians may encounter difficulties in obtaining approval for cutting-edge therapies or may face reimbursement challenges due to the lack of established billing codes or coverage policies for these treatments.
• Lack of Understanding of Insurance Agreements: Many patients fail to thoroughly read and understand the details of their insurance agreements before signing them. This can lead to misunderstandings regarding covered services, out-of-pocket costs, and limitations on coverage for specific treatments or medications. Clinicians may need to spend additional time educating patients about their insurance coverage and advocating on their behalf to ensure that they receive the necessary care.
• Missing Medical Insurance Claims: Some medical insurance claims may be missing important information, such as a patient’s history of tobacco consumption, which can impact the processing and reimbursement of claims. Clinicians must ensure that all relevant medical information is accurately documented and submitted to insurance companies to avoid delays or denials of coverage.

• Low Rates of Health Insurance Coverage: In many regions, a significant portion of the population lacks adequate health insurance coverage, which can pose significant financial barriers to accessing cancer treatment. Clinicians may encounter patients who delay or forgo necessary care due to concerns about affordability or lack of insurance coverage, leading to poorer health outcomes.
• Financial Burden on Patients: Even for patients with health insurance, the out-of-pocket costs associated with cancer treatment can be substantial. Co-payments, deductibles, and coinsurance payments can quickly add up, placing a significant financial burden on patients and their families. Clinicians may need to work closely with patients to explore financial assistance programs, alternative payment options, or advocacy resources to help mitigate these costs.

Addressing these challenges requires a multifaceted approach involving collaboration between clinicians, insurance providers, policymakers, and patient advocacy groups. By advocating for comprehensive insurance coverage, improving patient education and awareness, and implementing innovative payment models, clinicians can help ensure that all patients have access to the cancer care they need without facing undue financial hardship.

Are you aware of Do you think patients and advocacy groups are doing something to solve such issues?

Yes, patients and advocacy groups play a crucial role in addressing issues related to cancer care and advocating for improvements in the healthcare system. Here are some ways in which patients and advocacy groups are actively working to solve such issues –

• Raising Awareness: Patients and advocacy groups work tirelessly to raise awareness about cancer prevention, early detection, and treatment options. They organize educational campaigns, workshops, and community outreach programs to disseminate information and empower individuals to take charge of their health.
• Advocating for Policy Changes: Patients and advocacy groups often advocate for policy changes at the local, national, and international levels to improve access to cancer care, support research funding, and promote patient rights.
• Providing Support Services: Many advocacy groups offer a wide range of support services to cancer patients and their families, including emotional support, financial assistance, transportation services, and access to resources such as support groups, counseling, and educational materials.
• Funding Research: Patients and advocacy groups often play a significant role in funding cancer research by organizing fundraising events, establishing research grants and scholarships, and collaborating with academic institutions and research organizations to support innovative research initiatives.
• Driving Innovation: Patients and advocacy groups are instrumental in driving innovation in cancer care by advocating for patient-centered research, promoting the development of new treatments and therapies, and pushing for the adoption of cutting-edge technologies and approaches that improve outcomes and quality of life for patients.
• Participating in Clinical Trials: Patients and advocacy groups actively participate in clinical trials to help advance scientific knowledge and evaluate new treatments and interventions. By volunteering to participate in clinical research, patients contribute directly to the development of new therapies and ultimately improve outcomes for future generations.

Next panelist is Dr. Vijay Sanarkaran, who has an extensive experience in different insurance companies. There is a lack of awareness and education at various levels resulting into the denial of claim settlements, cancer care also needs lot of palliative care, pre and post-treatment, and that is a challenge that patient and their families face as there are denial of reimbursement based on the design of policy.

How can patients and their families be more aware of this, and Do you think patient advocacy groups can be of any help?

Increasing awareness among patients and their families about health insurance and its implications in cancer care is crucial for ensuring they make informed decisions. Here are some ways patients and their families can become more aware –

• Education and Understanding: Patients should thoroughly educate themselves about their insurance coverage, including benefits, limitations, and exclusions. They should carefully review policy documents, ask questions, and seek clarification from insurance providers to ensure they have a comprehensive understanding of their coverage.
• Types of Health Insurance: Patients should be aware of the different types of health insurance available, such as indemnity insurance cover and critical illness insurance cover. Understanding the differences between these types of coverage can help patients select a policy that best meets their needs and provides adequate protection in the event of a cancer diagnosis.
• Proactive Approach to Insurance: Instead of viewing insurance as an afterthought, patients should take a proactive approach to securing coverage before a medical crisis occurs. Encouraging individuals to invest in health insurance as a necessity rather than a luxury can help ensure they have financial protection in place to cover the costs of cancer treatment.
• Government and Private Organization Support: Governments and private organizations play a crucial role in promoting health insurance literacy among the population. By implementing educational campaigns, workshops, and outreach programs, they can help raise awareness about the importance of health insurance and empower individuals to make informed decisions about their coverage options.
• Patient Advocacy Groups: Patient advocacy groups can play a vital role in supporting patients and their families throughout their cancer journey, including navigating the complexities of health insurance. These groups can provide resources, guidance, and emotional support to help individuals understand their insurance options, advocate for their rights, and access the care they need. 

Next panelist we have is Dr. Prakash, Managing Director with a demonstrated history of working in the insurance industry. 

My question to you is – Do you see a role of patient advocacy groups in insurance policy making? Should they be involved?

Yes, patient advocacy groups can play a significant role in insurance policy-making, especially concerning healthcare coverage for cancer patients. Here’s how they can be involved and why their participation is important –

• Representation of Patient Perspectives: Patient advocacy groups represent the interests and perspectives of individuals directly affected by cancer. They can provide valuable insights into the unique challenges faced by patients, including the financial burden of treatment, access to specialized care, and the need for comprehensive insurance coverage. 
• Advocacy for Comprehensive Coverage: Patient advocacy groups are often at the forefront of advocating for comprehensive insurance coverage for all types of cancer. They can lobby insurers and policymakers to ensure that insurance policies include coverage for essential cancer treatments, medications, diagnostic tests, and supportive care services. perimental treatments through clinical trials.
• Education and Awareness: Patient advocacy groups can play a crucial role in educating patients about their insurance options, rights, and benefits. They can provide resources, guidance, and support to help patients navigate the complexities of the insurance system, understand their coverage options, and advocate for their needs.
• Policy Research and Analysis: Patient advocacy groups often conduct research and analysis on insurance policies and their impact on cancer patients. They can provide data, evidence, and recommendations to inform policy debates and shape insurance regulations. 
• Collaboration with Stakeholders: Patient advocacy groups can collaborate with insurers, policymakers, healthcare providers, and other stakeholders to develop policy solutions that address the needs of cancer patients. 

What is your experience rejection rate of the claims related to cancer (are they more intentional or technical i.e. unawareness of the treatment journey etc.) and what do you feel could reduce them?

When we talk about claim rejections, there are waiting periods, standard exclusions, pre-existing diseases, and endorsements involved. This means policyholders aren’t taking enough time to understand what they need. Also, the policy design is very complicated, and people in the same industry struggle to choose the right product. This is an ongoing challenge. Rejections occur when there’s suspicion about product usage due to customers not disclosing their actual disease intentionally.

Incidence rate statistics show that 10-20% of people withhold information and still try to make a claim, which affects the balance and leads to an increase in the incidence rate.

Out of 100 hospitals, even if 10% are conducting unnecessary investigations, prolonging hospital stays, performing unnecessary procedures, and incurring unwarranted professional costs, it all adds up and increases the average cost. We need to organize a group with a team of volunteers to demonstrate that finances can be covered with the help of insurers, thus reducing financial liability.

To reduce these rejections, I believe there needs to be a multifaceted approach that includes enhanced policyholder education, simplified policy design, and improved collaboration between insurers and healthcare providers.

Intentional non-disclosure often occurs when policyholders purposefully withhold information about their medical history, including pre-existing conditions like cancer. This can stem from a lack of awareness about the importance of full disclosure or financial incentives to avoid higher premiums. On the other hand, technical factors such as complex policy terms and limited understanding of cancer treatment can lead to unintentional non-disclosure or misunderstandings about coverage.

To address these challenges and reduce rejection rates, the following steps could be taken –

Enhanced Policyholder Education

• Conduct educational campaigns to raise awareness about the importance of full disclosure and understanding of policy terms.
• Provide clear and concise communication about policy terms and coverage options to policyholders.

Simplified Policy Design

• Simplify policy terms and conditions to make them more accessible and understandable for policyholders, particularly regarding cancer coverage.
• Offer personalized guidance and assistance during the policy selection process to help policyholders choose the most suitable coverage options.

Collaboration with Healthcare Providers

• Collaborate with healthcare providers to implement quality assurance measures aimed at reducing unnecessary investigations, procedures, and costs associated with cancer treatment.
• Establish a collaborative claims review process involving insurers, healthcare providers, and policyholders to address any discrepancies or misunderstandings regarding treatment necessity and coverage eligibility.

Community Engagement and Advocacy

• Form volunteer groups composed of healthcare professionals, policyholders, and community advocates to educate and support individuals affected by cancer.
• Advocate for policyholder rights and fair claims processing practices to ensure that individuals receive the coverage and support they need during their cancer journey.
• By implementing these measures, we can work towards reducing claim rejection rates related to cancer and ensuring that policyholders receive the support and coverage they need during challenging times.

The next question is to my panelist Ms. Deepti Bhaskara who is Head of Strategic Initiatives, at Clinikk Healthcare.

Health insurance in India is still focused on covering hospitalization expenses and still comes with conditions that make the coverage restrictive. Why is that and how can advocacy help here?

The focus of health insurance in India on covering hospitalization expenses and the presence of restrictive conditions in insurance coverage can be attributed to several factors –

• Historical Context: Health insurance in India has traditionally been designed to cover the costs associated with hospitalization, surgeries, and other inpatient treatments. This focus stems from the prevalence of infectious diseases, acute illnesses, and the high cost of hospital-based care.
• Risk Management: Insurers often design policies with restrictive conditions to manage their financial risk and control costs. These conditions may include waiting periods, pre-existing condition exclusions, sub-limits on coverage for specific treatments or procedures, and co-payments or deductibles that shift some of the financial burden to policyholders.
• Adverse Selection: Insurers may impose restrictive conditions to mitigate the risk of adverse selection, whereby individuals with higher health risks are more likely to purchase insurance coverage. By imposing waiting periods, exclusions, and other restrictions, insurers aim to balance their risk pool and prevent adverse selection, which could otherwise lead to higher premiums for all policyholders
• Lack of Awareness: Many individuals in India may not fully understand the terms and conditions of their health insurance policies or may be unaware of the available coverage options. This lack of awareness can lead to misunderstandings, disputes, and dissatisfaction with insurance coverage, particularly when policyholders discover limitations or exclusions at the time of filing a claim.
• Regulatory Environment: The regulatory framework governing health insurance in India also influences the design of insurance policies and the extent of coverage provided. While regulations such as the Insurance Regulatory and Development Authority of India (IRDAI) guidelines aim to protect consumers and promote transparency, insurers may still have leeway in designing policies within regulatory constraints.

Advocacy can play a crucial role in addressing these challenges and advocating for more comprehensive and patient-friendly health insurance policies in India. Here’s how advocacy efforts can help –

• Policy Advocacy: Patient advocacy groups and organizations can engage with policymakers, regulatory authorities, and insurance companies to advocate for policy changes that promote more comprehensive health insurance coverage. 
• Consumer Education: Advocacy groups can conduct educational campaigns to raise awareness among consumers about their rights and responsibilities regarding health insurance coverage. 
• Public Awareness Campaigns: Advocacy efforts can also involve raising public awareness about the importance of comprehensive health insurance coverage and the impact of restrictive conditions on access to healthcare.

Next question is to Dr. Sameer Bakshi, who is a Medical Oncologist in AIIMS, Delhi

Can you please share an example where advocacy groups optimized the insurance availability, accessibility, or inclusion of drugs in the schemes? Any Indian or international example can help?

Where do you place the role of patient advocacy in the long run, maybe 5-10 years on?

Getting approval for a drug required extra effort, whether it was successful or not. This happened when immunotherapy was approved for lung cancer in India, making it the first drug approval. However, it wasn’t approved for melanoma because the market for it was very small. So, the company asked the DCGI for approval for lung cancer.

In 2018, I had a middle-aged lady, aged 50, with recurrent metastatic melanoma. She was a CGHS beneficiary, but there was no approval for this drug. It was a curative treatment for metastatic melanoma, but it wasn’t getting approved. We had to write 3 or 4 series of letters from the institute for the appeal, and committees were formed to look into the claim. After 3 or 4 months, the claim got approved, and then this lady received treatment for a period of 2 years. Now, I am proud to say that she is a cancer survivor today.

In the United States, under Medicaid, if a drug is generally approved and there is overall approval, then those claims are considered. So, in one case, we succeeded because there was international data, but in another case, there was a lack of approval. However, approval doesn’t always mean the drug is covered by insurance.

In the long run, over the next 5-10 years, the role of patient advocacy is likely to become even more significant and influential in shaping healthcare policies, practices, and outcomes. Here are some key areas where patient advocacy may play a crucial role –

• Policy Influence: Patient advocacy groups will continue to advocate for policies that prioritize patient rights, access to affordable healthcare, and improved quality of care. 
• Research and Innovation: Patient advocacy groups may increasingly collaborate with researchers, industry stakeholders, and government agencies to drive research and innovation in areas of unmet medical need. 
• Health Equity: Patient advocacy will likely focus on addressing health disparities and promoting health equity, particularly for marginalized and underserved populations. Advocacy groups may advocate for policies and programs that reduce barriers to healthcare access, address social determinants of health, and promote culturally competent care to ensure that all patients have equal opportunities to achieve optimal health outcomes.
• Patient Empowerment: Patient advocacy efforts may continue to empower patients to take an active role in their healthcare decisions, advocate for their needs, and access information and resources to navigate the healthcare system effectively.
• Legislative and Regulatory Advocacy: Patient advocacy groups may engage in legislative and regulatory advocacy to shape healthcare policy at the local, national, and international levels. 

The next question is to Dr. Maulik Chokshi, Deputy Country Director – Access Health International

When it comes to a large population like ours, what gaps do you see when it comes to insurance coverage ( adequacy of sum assured vs premium viz a viz presentation) and what are your views on bridging these gaps?

Do you think patient advocacy can help?

In a large population like India’s, there are several gaps in insurance coverage that impact the adequacy of sum assured relative to the premium paid and the presentation of insurance policies. These gaps can be attributed to various factors –

• Limited Coverage Options: Many insurance policies in India offer limited coverage options, with predefined sum assured amounts that may not adequately cover the costs of healthcare services, particularly for serious or chronic illnesses like cancer. 
• Pre-existing Condition Exclusions: Some insurance policies may impose exclusions or waiting periods for pre-existing conditions, which can prevent individuals with pre-existing health conditions, such as cancer or diabetes, from accessing comprehensive coverage for their medical needs. 
• High Premiums: The premiums charged for health insurance policies in India can be relatively high compared to the sum assured provided. This can make it challenging for individuals, especially those with lower incomes or limited financial resources, to afford insurance coverage that adequately meets their healthcare needs.
• Lack of Transparency: There may be a lack of transparency in the presentation of insurance policies, with complex terms, conditions, and exclusions that are difficult for consumers to understand. 

To bridge these gaps in insurance coverage and ensure that individuals have access to adequate and affordable healthcare protection, several measures can be taken –

• Regulatory Reforms: Regulatory authorities, such as the Insurance Regulatory and Development Authority of India (IRDAI), can introduce reforms to standardize insurance policies, enhance transparency in policy presentation, and enforce stricter regulations on pre-existing condition exclusions and waiting periods. This can help ensure that insurance policies provide comprehensive coverage that meets the needs of consumers.
• Innovative Products: Insurance companies can develop innovative insurance products that offer flexible coverage options, customizable sum assured amounts, and affordable premiums tailored to the needs and preferences of consumers. This can include products specifically designed to cover the costs of critical illnesses like cancer, with comprehensive coverage and affordable premiums.
• Consumer Education: Patient advocacy groups, along with government agencies and non-profit organizations, can play a crucial role in educating consumers about the importance of health insurance coverage, how to understand insurance policies, and how to choose the right insurance product for their needs.
• Advocacy for Policy Changes: Patient advocacy groups can advocate for policy changes and reforms that promote greater access to affordable and comprehensive health insurance coverage for all individuals, regardless of their health status or financial situation. 

Thank you so much….

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