www.survivorshipatoz.org

The specific problem we are addressing is the overwhelming challenges faced by individuals upon receiving a diagnosis of a life-challenging health condition such as AIDS or cancer. This diagnosis often thrusts individuals into a complex and unfamiliar world for which they are ill-prepared. Our solution aims to provide comprehensive support and guidance across various critical areas, including: 

·       Accessing quality healthcare in a financially affordable manner.

·       Maximizing government and private health insurance coverage, including tips for making appeals.

·       Obtaining health coverage if needed.

·       Choosing a doctor and treatment options.

·       Seeking second opinions and maximizing time with medical professionals.

·       Navigating workplace issues, including communication with fellow employees and employers, and understanding rights regarding benefits such as disability benefits.

·       Managing relationships with caregivers, family, and friends, including addressing financial concerns such as borrowing money from a friendly source if necessary.

·       Making informed decisions about legal and practical matters such as appointing a healthcare proxy, drafting advance directives, addressing end-of-life wishes (including considerations for assisted dying), funeral arrangements, wills and estate planning.

By providing free, online support and guidance in these critical areas that an be personalized, our solution aims to empower individuals facing life-challenging health conditions to navigate this complex journey with confidence and clarity, ultimately improving their overall health, well-being and quality of life. Our solution also helps a subject person's caregivers.

Our solution is a comprehensive online platform designed to address the myriad challenges individuals face upon receiving a diagnosis of a life-challenging health condition. It is envisioned that disease specific non-profits will link to the site in a manner that it appears Survivorship A to Z and the organization cooperatively created the website.

The existing website, which requires updates both with respect to content and underlying mostly hand built IT, serves as a repository of practical answers to the wide array of problems encountered in such situations created by experts, not a computer program. When comprehensive information about a subject already exists online, our site links to it rather than recreate the wheel.

To ensure personalized support, users can access this wealth of information and advice through various means depending on preference and need:

·       The platform's centerpiece is a collection of legal, financial, insurance and other practical information, written with a singular voice written for a 10th grade reading level, synthesized and vetted by experts in their respective fields. This core resource provides breadth and depth of information not readily available elsewhere, much less in one place, offering invaluable guidance to users navigating complex healthcare and life-related decisions.

·       For individuals seeking guidance on managing a particular health condition, such as HIV/AIDS or a type of cancer, the platform offers disease-specific guides. These guides have been developed in collaboration with national disease-specific non-profits, ensuring accuracy and relevance. Each guide links seamlessly to the core information repository, offering users comprehensive support tailored to their specific life challenging health condition.

·       Last, but not least, users can complete a questionnaire tailored to their specific circumstances. Based on their responses, the platform provides customized guidance to address their unique needs and challenges.

Additionally, the platform features unique worksheets designed to help users track and manage various program requirements, such as Social Security Disability Income eligibility criteria. These practical tools empower users to navigate bureaucratic processes and financial considerations with confidence and ease.

Our solution, SurvivorshipAtoZ.org, serves individuals across the entire spectrum of the population including people who are black, brown or LBGTQ+ who receive any life-challenging diagnosis, as well as their families and friends. While initially developed with a focus on HIV/AIDS, its scope extends to anyone facing a life challenging diagnosis, regardless of socioeconomic status or background.

Our comprehensive resources offer valuable guidance on a wide range of topics, ensuring that individuals from all walks of life have access to the information and support they need to navigate their healthcare journey effectively.

For individuals from underserved communities, such as LGBTQ+ and the black population in the South affected by HIV/AIDS, our solution addresses critical gaps in access to information and support. By providing comprehensive resources relating to legal, financial, insurance, practical and healthcare-related matters, we empower these individuals to navigate the complexities of their diagnosis with confidence and clarity.

For middle-class individuals, who may possess more education and financial resources but still face significant challenges, our solution offers invaluable guidance to mitigate unnecessary financial burdens and ensure optimal access to healthcare. From understanding insurance coverage and navigating the healthcare system to managing finances and planning for end-of-life care, our platform equips users with the knowledge and tools needed to make informed decisions and safeguard their well-being.

Even individuals of wealth, who may not typically encounter financial challenges associated with a life-challenging diagnosis, can benefit from our solution by gaining insights into maximizing medical care and planning for end-of-life.

In sum, Survivorship A to Z impacts the lives of individuals facing life-challenging diagnoses by providing essential information, practical tips, and support tailored to their unique circumstances. By addressing critical gaps in access to information and support, our solution empowers individuals and their families to navigate their healthcare journey with confidence, resilience, and dignity.

Our team, led by our founder David S. Landay, Esq., an out gay man, possesses a unique combination of expertise, experience, and personal insight that uniquely positions us to deliver our solution effectively.

David's background in law and finance, with a degree in Insurance from Wharton School of Finance and Commerce (where he received a prize for his insurance scholarship) and a J.D. from Harvard Law School, equips him with a deep understanding of the legal and financial complexities individuals face when dealing with life-challenging health conditions.

David knows first hand the challenges faced by individuals with life-challenging conditions. In addition to both his parents and his sister dying of cancer, he was an active member of the LGBTQ+ community when HIV/AIDS hit. He had a house in the gay community of Cherry Grove on Fire Island, NY and had segued to producing and writing for Broadway. David's personal experiences living through the AIDS epidemic in New York City including caring for a partner who died of HIV/AIDS, and his involvement in HIV/AIDS advocacy led him to become a principal founder of Broadway Cares/Equity Fights AIDS. He also served as a director on several national HIV/AIDS non-profit organizations.

As Board Chair of Community Research Initiative, an organization that conducted clinical trials with respect to HIV/AIDS, he saved the organization by creating a unique way to permit it to continue when faced with an ultimately unbearable debt which he was aware of when he assumed the position.

Additionally, David's involvement with various other HIV/AIDS and cancer-related organizations, including serving as an advisor to Cancer Care and a multi-year member of the board of directors of Until There's A Cure, has allowed him to gain a comprehensive understanding of the dynamics and needs of these communities.

As a caregiver at heart, David's motivation to provide support and guidance to individuals facing life-challenging diagnoses is evident in his work, including authoring BE PREPARED, The Complete Financial, Legal and Practical Guide to Living with Cancer, HIV and Other Life-Challenging Conditions (St. Martin’s Press) and creating the SurvivorshipAtoZ.org website. Limited by the publisher, St. Martin’s Press, to the number of pages, and wanting to add specific disease and other information, he created the website SurvivorshipAtoZ.org.

His commitment to empowering individuals with comprehensive information and resources underscores our team's dedication to delivering a solution that makes a meaningful impact on the lives of those we serve.

Nora Hanna and interns at Until There's A Cure (until.org) as new members of the team.

As a member of the fashion community, Nora lived through the initial years of HIV/AIDS and has been an outstanding executive director of Until There’s A Cure for almost 10 years – working with AIDS non profits and funders. She has also built an intern program for the organization that is being schooled in HIV and practical ramifications, as well as assisting in fund raising.

Until There’s A Cure reminds people that despite wide spread public perception, AIDS is not over.

The website SurvivorshipAtoZ.org already exists online. It has core information, worksheets, a personalized guide, disease guides for AIDS, Breast Cancer and Colon Cancer.  The underlying mostly hand built IT needs to be replaced and legal and practical information needs to be updated.

The website has been dormant for the past decade and did not keep track of the number of beneficiaries served. 

Survivorship A to Z is applying to Solve for a variety of reasons.

• For support to move from our site’s outdated, mostly hand built IT to easily maintained and/or modified existing or newly built programs that allow flexibility, ease of maintenance and additional worksheets as they may be needed
• Add IT for mobile versions of the site
• Help modify the visual so it can appear to be the product of individual partner disease organizations and have a current feel
• Help bring on board volunteer experts:
  • Relating to HIV/AIDS, breast and colon cancer
  • To help identify and add content with respect to other life challenging diseases, particularly those relating to underserved communities
  • To update and keep existing content to date
• If necessary, to compensate experts for pulling together specific disease overviews not covered to date
• Help hire interns to do the work, and help identify ongoing needs and create solutions.

Our solution, SurvivorshipAtoZ.org, demonstrates several innovative features:

·       Unlike other resources, our platform covers all disciplines related to life-challenging health conditions, with content created or vetted by experts rather than relying upon artificial intelligence. This comprehensive approach ensures users have access to accurate, reliable information across various domains, including legal, financial, and healthcare-related matters.

·       Users have the flexibility to explore general overviews or delve into specific topics as deeply as needed.  Our platform empowers individuals to navigate their healthcare journey at their own pace and level of detail.

·       While initially designed for HIV/AIDS, our platform can easily accommodate any life-challenging condition. Its modular structure allows for seamless integration of disease-specific information, making it adaptable to a wide range of health conditions and ensuring relevance for diverse user populations.

·       The platform's interactive questionnaire allows users to personalize their experience, tailoring content to their specific circumstances and preferences. This user-friendly approach enhances engagement and ensures that users receive information relevant to their unique needs.

·       By partnering with local and national organizations and translating content into multiple languages, our platform has the potential to reach and serve diverse communities throughout the United States and worldwide. This collaborative approach fosters inclusivity and ensures that the platform remains relevant and accessible to users across the country and potentially globally. Access to our content also means partner organizations can focus their financial and other resources in other areas.

Overall, SurvivorshipAtoZ.org's innovative features, comprehensive approach, and adaptability make it a valuable resource for individuals facing life-challenging health conditions and their supporters, as well as organizations working in this space.

Our solution, SurvivorshipAtoZ.org, aims to have a positive impact on people's lives all across America (and potentially beyond) by providing the information and resources needed to navigate a life-challenging health condition more effectively.

By offering comprehensive and reliable practical information about legal, financial, and healthcare-related matters, our platform empowers individuals to make informed decisions about their care and the practical ramifications of their diagnosis to optimize their health outcomes and quality of life. This knowledge equips them to access necessary treatments, understand their rights, and navigate complex healthcare systems more effectively. It also helps them maximize their benefit from and relationship with local and national non-profits and other resources.

By empowering people with knowledge, support, and resources, we help them navigate their healthcare journey with confidence, resilience, and dignity, leading to improved health outcomes and overall well-being for themselves and their loved ones.

In addition to the common sense of our approach, there are a limited number of studies that support the benefit of patient education programs. For instance, with respect to cancer:

·       A study titled Patient Education and Support During Treatment for Breast Cancer: A Randomized Clinical Trial (reported in JAMA Oncology - October 2015). The study found that women undergoing treatment for breast cancer who participated in a patient education and support intervention reported greater satisfaction with their care, improved communication with healthcare providers, and reduced anxiety levels compared to those receiving standard care alone.

·       A study titled The Effect of a Structured Education Program on Patients With Breast Cancer: A Randomized Clinical Trial (reported in European Journal of Oncology Nursing, April 2020) - investigated the impact of a structured education program on women with breast cancer undergoing chemotherapy. The study found that participants in the education program demonstrated significantly higher levels of knowledge about breast cancer and its treatment, improved adherence to treatment regimens, and better emotional well-being compared to those in the control group.

With respect to HIV/AIDS:

• The Healthy Living Project (JAMA, 2006), evaluated the effectiveness of a behavioral intervention aimed at improving adherence to antiretroviral therapy (ART) among HIV-infected individuals. The intervention included education on medication adherence, coping strategies, and problem-solving skills. Results showed significant improvements in adherence to ART and viral suppression among participants who received the intervention compared to those who received standard care.
• The SMART Study (The New England Journal of Medicine,2006). Findings from the study underscored the importance of patient education in HIV/AIDS management.
• The Positive Self-Management Program (AIDS Patient Care and STDs, 2007). The program included education on medication adherence, symptom management, and communication skills. Results showed improvements in medication adherence, quality of life, and psychosocial outcomes among participants.

It is our understanding that similar interventions and outcomes are observed as well in other life challenging conditions.

Our impact goals for SurvivorshipAtoZ.org are centered around reaching and empowering as many individuals as possible, with a particular focus on underserved populations, such as black men and women in the American South and the LGBTQ+ community. Here's how we plan to measure our progress towards these goals:

·       Reach and Engagement: We will track the number of users accessing our platform and engaging with its resources. This includes metrics such as website traffic, page views, and time spent on the site. By analyzing these metrics, we can assess the extent of our reach and the level of engagement among our target audience.

·       User Feedback and Satisfaction: Gathering feedback from users through surveys, interviews, and user reviews will provide valuable insights into the effectiveness and impact of our platform. We will measure user satisfaction, perceived usefulness of the resources provided, and areas for improvement based on user feedback.

·       Partnership Growth: We aim to expand our network of partner organizations, particularly those serving underserved communities. Tracking the number of partnerships established within a given timeframe will indicate our progress in reaching and collaborating with organizations that can help us amplify our impact and reach new audiences. Not incidentally, partnership with our organization will benefit our partners and their constituents as well.

·       Targeted Outreach: Implementing targeted outreach efforts to specific demographics, such as black men and women in the South, will allow us to assess the effectiveness of our strategies in reaching underserved populations. Monitoring the response rate and engagement levels among these targeted groups will help us evaluate the success of our outreach initiatives.

·       Health Outcomes: Tracking indicators such as self-reported treatment adherence, healthcare utilization, and health status can help us assess the impact of our platform on health outcomes over time.

By setting measurable goals and regularly tracking our progress towards them, we can continuously evaluate and refine our strategies to maximize our impact (and the impact of our partners) while reaching our ultimate goal of empowering individuals facing life-challenging health conditions to live longer, healthier, and happier lives.

The core technology powering SurvivorshipAtoZ.org was developed more than 20 years ago and is primarily based on handcrafted IT infrastructure. While functional, this legacy technology is in need of replacement and modernization to solve the problems facing people with HIV/AIDS and other life challenging conditions. By investing in modern technology solutions, SurvivorshipAtoZ.org can better meet the needs of users and continue to provide valuable support to individuals facing life-challenging health conditions.

As of now, our team consists of executive director, David S. Landay, Esq. Moving forward, it will include the Executive Director of Until There’s A Cure and a minimum of two of its interns.

With financing, we plan to bring on board additional interns and a minimal number of staff members. These team members will engage in various aspects of the platform's operations, including recruiting volunteer experts to contribute their expertise to our content and forms, content management, technical support, outreach, and administration. Experts will be credited for their contributions with information about how the public can access them.

www.SurvivorshipAtoZ.org  was launched in the early 2000's preceded by publication in 1998 of David Landay's book: BE PREPARED, The Complete Financial, Legal and Practical Guide to Living With Cancer, HIV and Other Life-Challenging Conditions (St. Martin’s Press).

Just as publication of a free guide informing people with a life challenging condition about alternatives to selling a life insurance policy, or if that didn’t work, how to sell them led to the book BE PREPARED -- reactions to the book indicated people wanted additional information, which in turn led to creation of the website to provide information without limitation.

When David ran National Viator Representatives (NVR), an innovative broker in the then new field of viatical settlements, staff was inclusive, including sex, sexual preference, age, color and race etc. - with no discrimination in hiring. The same will apply to future hires.

We are very aware of the need for diversity, equity and inclusion to reflect the variety of populations to which the site is targeted, minimizing barriers to opportunity, and fostering a welcoming and inclusive environment.

Here's how we approach these aspects within our team:

·       Hiring practices are based on merit and qualifications, with no discrimination based on factors such as gender, sexual orientation, race, ethnicity, age, or other personal characteristics. NVR had a history which David will continue going forward of actively seeking out candidates from diverse backgrounds to ensure that our team reflects the diversity of the population we serve.

·       We are committed to providing equal opportunities for all staff members to develop their skills, advance in their careers, and contribute to the success of the organization. This includes offering training and professional development opportunities, providing fair compensation and benefits, and creating a supportive work environment where everyone's voice is valued.

·       David through NVR has a history of fostering a culture of inclusivity and respect where all team members feel valued, heard, and supported.

·       Survivorship A to Z has a history of engaging with diverse communities, organizations, and stakeholders to understand their unique needs and perspectives. By actively listening to and involving the communities we serve, we ensure that our platform is responsive to their needs and reflects their experiences.

·       We will regularly assess and evaluate our practices to identify areas for improvement and ensure that we are living up to our values of diversity, equity, and inclusion. This includes soliciting feedback from staff members and implementing policies and initiatives to promote inclusivity and diversity within the organization.

Overall, we are committed to creating a diverse, equitable, and inclusive environment where all team members can thrive and contribute to our mission of empowering individuals facing life-challenging health conditions.

SurvivorshipAtoZ.org operates on a non-profit business model, focused on providing valuable information and advice, resources and support to individuals facing life-challenging health conditions without the pressure of commercial interests.

Our non-profit business model enables us to prioritize the needs of our users and maintain the integrity and impartiality of our content.  

We rely on donations and grants from individuals, foundations, and organizations to fund our operations and support the ongoing development and maintenance of the platform. These contributions enable us to offer our services free of charge to users and ensure that our resources remain accessible to all. 

While one of our goals is to partner with existing disease specific non-profit organizations and provide information to their constituents, it is anticipated that we will receive donations from those in a position to financially assist our mission and/or to help us raise grants and/or donations. For example, it was initial discussions about working with Until There’s A Cure that led to our learning about your challenge. Until There’s A Cure can help provide access to grants from pharmaceutical companies and potentially other sources.

We will also reach out to individuals who share our vision. 

We will consider organizing fundraising events, campaigns, or initiatives to raise awareness about our mission and generate financial support from the community. 

Overall, our non-profit business model enables us to prioritize the needs of our users and maintain the integrity and impartiality of our content, ensuring that we can continue to provide valuable support and resources to individuals facing life-challenging health conditions now and in the future.

SurvivorshipAtoZ.org's plan for financial sustainability revolves around leveraging partnerships, such as Until There’s A Cure with its access to major funders, grants, and philanthropic support while maintaining a commitment to its non-profit model.

We will also seek major funders who have an interest in a particular disease, exciting endeavors and/or community health care in general. For example, a major funder early on was Willard Hackerman, a Baltimore based philanthropist, now deceased.

The organization intends to maintain transparency in its financial management and reporting, ensuring that donors and stakeholders have confidence in its operations. This includes providing financial statements, annual reports, and disclosures of sources of funding.

While the organization is committed to its non-profit model, we remain open to exploring alternative revenue streams that align with our mission and values. This may include accepting advertisements if safeguards can be implemented to ensure no perception of influence by advertisers.