By Dana Dornsife, Lazarex Cancer Foundation Founder and CEO
It has been an incredibly difficult year for so many people because of the pandemic and the many challenges that have come with it. But even in the hardest of times, we all have a choice whether or not we want to be consumed by the negative or seek out, acknowledge, and appreciate the silver linings.
This is a life lesson I am reminded of everyday thanks to the incredible and inspiring cancer patients we are blessed to work with at Lazarex Cancer Foundation. Even when they are facing daunting and life-threatening diagnoses, incredible economic challenges and their lives have been upended, I am consistently awed by the ability of these men, women and children to be filled with hope, and grateful for the good in their lives — no matter how hard life has become.
In the spirit of their resilience, optimism and positivity, here are 4 things I am grateful for in 2020:
1) COVID ignited a movement to create change around health disparities.
The racial disparities around clinical trials are shameful. Our minority populations are grossly underrepresented in clinical trials and many patients eligible for cancer clinical trials do not enroll due to financial hardship, and yet — it’s been hard to get widespread attention focused on this systemic racism in healthcare.
COVID-19 is changing that.
The pandemic put a much-needed spotlight on racial disparities this year in all parts of society and it is opening people’s eyes to what health disparities are, how widespread they are and how deeply that impacts health outcomes across the board.
Creating awareness of this problem isn’t the same as crafting solutions to fix it but it is the first step — and a very important one from an advocacy standpoint. We do not want to revisit this in the wake of the next pandemic.
2) Decentralization of trials.
There has long been a push in the healthcare industry to take clinical trials to the patient. But while there has always been a lot of interest and talk about this — there’s been little action. However, the pandemic changed things. COVID forced innovation and new ways of thinking and it required clinical trial sites to find ways of harnessing technology to continue providing potentially life-saving treatments to patients, minimize the risk of COVID exposure to immunocompromised participants and keep their research on track.
What we have learned this year is — not only does it work — there are also many benefits. Patients still have to go to clinical trial sites for essential elements that can only be delivered there — whether infusions or the delivery of other types of treatment. But there is so much that can be done closer to home — blood draws, diagnostics, CT scans and other imaging. Many health assessment and survey appointments can effectively be done through telehealth. What we are finding is that this leads to:
- Reduced cost to conduct trials.
- Lower out of pocket travel costs for patients.
- Less burden on patients who don’t have to travel as often or as far, spending less time at a trial site because more is being done closer to home.
- Freeing up valuable time for researchers and caregivers can utilize their skill-set appropriately and efficiently doing what only they can do while letting others do what they are trained to handle.
- Opening up trials to a larger potential pool of patients since logistic and financial requirements of participation are less.
- Creating an opportunity to engage with doctors in the community and get them involved in the clinical trial process.
Looking ahead to 2021, once the vaccine is distributed widely, we don’t want to see a return to old practices. Decentralization of trials is a silver lining of 2020 that needs to become standard operating business because it’s a win-win situation for everyone, patients, investigators, and sponsors.
3) Legislative Victories Help Cancer Patients in Illinois, Wisconsin and Massachusetts.
State lawmakers in Illinois and Wisconsin passed legislation in early 2020 reinforcing the FDA’s 2018 guidance language giving the green light to reimburse cancer patients for travel expenses to clinical trial sites. Then, in a very exciting and late-breaking 2020 development, the Massachusetts House and Senate, on December 23rd, passed similar legislation. The language in the Massachusetts compromise healthcare bill says that reimbursement is allowed, permitted, ethical and in no way amounts to coercion. It now heads to the Governor’s desk for a signature. This is a change we have been advocating for in Massachusetts over the last 5 years. If the Governor signs it, the state will become the 6th to pass such a bill. Similar legislation is currently pending in four other states.
4) The Lazarex PATH program (Patient Access Transforming Health).
It is critical to intentionally remove financial barriers to cancer clinical trials to create equitable access. That is the goal of the PATH program. We established a framework for PATH this year, providing a system in which clinical trial sponsors (biopharma companies) can reimburse patients for their clinical trial related travel expenses, address the appallingly low inclusion of minorities, and have a sustainable expense reimbursement platform for equitable access.
When organizations partner with us through PATH, two things happen:
1) Potential patients are notified at the time of enrollment in a clinical trial that there is a program that reimburses for travel expenses related to their participation and they are invited to join the program.
2) Lazarex then handles all technical, logistical and real-world responsibilities involved in getting patients reimbursed for their travel expenses in a timely fashion — every month.
There are several reasons this program is important. Partnering with Lazarex to handle these reimbursements relieves clinical trial sites of these tasks, which can take up a lot of their time. Case workers are already overburdened and not set up to efficiently handle patient reimbursement. As a non-profit, our overhead is lower, and because we are the only organization that makes this our daily mission, we are nimble and efficient.
Most importantly the program offers a pathway to reduce disparities in cancer trial access and outcomes, and improve minority participation in drug development, all of which benefits ALL cancer patients.
We have compelling data to show that when you offer reimbursement at the time of consent, it leads to faster enrollment and greater diversity. We are excited to watch the program grow in 2021.
All of these developments have been silver linings in a challenging year, and we are excited to build on these successes and expand on them in the New Year. We hope you will join us.
