The effects of the novel coronavirus pandemic on liver patients’ ability to access non-COVID-19 related care have been broad, and pervasive. The guidance for initiation of treatment and management for patients with viral hepatitis, transplant, and cancer have been in flux during this unprecedented time of COVID for several months. In this update I will focus on information for liver cancer patients and the efforts Global Institute is taking to help to define impactful, long term solutions.
The general information for cancer patients, including those living with liver cancers, is similar to that for any immunocompromised or high-risk patient – stay at home, isolate from infected family members, wash hands, disinfect surfaces, wear a mask in public spaces if you need to go out for essential work or errands. These patients require extra precaution.
Expect Care Disruptions
Cancer patients should expect reaching care teams through telehealth rather than in-person visits or clinics, initiation of care delayed, particularly in high-COVID19 areas, care intervals stretched out, supportive care delivered in home or alternate treatment options. Diversion of ventilators and those trained to administer them, such as, anesthesiologists will impact procedures. For insights into experience for liver health professionals on the front line of care watch the GLI Live interview with Dr. Ray Rubin, transplant hepatologist and Chief Scientific Officer at Piedmont Transplant Institute in Atlanta, GA.
The European Society of Medical Oncology provides detailed examples of potential adaptations of care delivery during this pandemic depending on what stage of cancer care and type of therapy, such as surgery, chemotherapy, radiotherapy, endocrinology, immunotherapy, or stem cell therapy.
The American Cancer Society recently released the results of a survey of more than 1,200 cancer patients and survivors on insights into the experiences in safely accessing and affording healthcare during the COVID-19 pandemic. Key findings include more than 55% of respondents in active cancer treatment are impacted. One in 8 patients in active treatment report care delays without having that care rescheduled. Thirty-eight percent of respondents report an impact on their financial ability to pay for care, in large part due to the loss of employer-based insurance coverage.
The National Comprehensive Cancer Network describes best practices for patient and healthcare worker safety in this new environment and the practical and ethical changes needed for health systems to implement the best path forward for providing care.
GLI recently joined more than 50 groups in calling on Congress and the administration to take action to help cancer patients gain, maintain and afford health coverage during the ongoing pandemic.
Some of the changes include, ensuring patients have access to a 90 day supply of medications, requiring insurance plans to cover oral chemotherapy the same as intravenous treatments, creating a special enrollment period so uninsured or underinsured Americans can enroll in comprehensive health plans established under the Affordable Care Act (ACA), increased funding for state Medicaid programs and subsidies to help people who lose their employer-sponsored health care afford their health insurance premiums for up to six months. Other suggested changes involve ensuring health plans don’t needlessly punish patients for having to seek out-of-network care should their regular providers be closed or unavailable due to the pandemic and promoting the use of telehealth.
Hepatocellular Carcinoma-specific Guidance
The International Liver Cancer Association (ILCA), the American Association for the Study of Liver Diseases (AASLD) and the European Society for Medical Oncology (ESMO) have provided recommendations for the provision of care for HCC patients. The most recent update of the AASLD clinical insights are available in Spanish and Portugese.
Key points from the April 16, 2020 update to the AASLD Clinical Insights include:
- Continue monitoring in those on or off therapy for HCC and continue surveillance in those at risk for HCC (cirrhosis, chronic hepatitis B) as close to schedule as circumstances allow, however, an arbitrary delay of 2 months is reasonable.
- Discuss the risks and benefits of delaying surveillance with the patient and document the discussion.
- Review images of new referrals for patients with liver masses in tumor board or with expert radiologists in a virtual multidisciplinary conference prior to scheduling an in-person visit.
- Consider virtual visits to discuss the diagnosis and management of HCC and other liver tumors.
- Proceed with HCC treatments when able rather than delaying them due to the pandemic.
ESMO guidelines set out priorities for care that include designating those patients at high priority for outpatient office visits:
- Patients with decompensated liver disease
- Patients on the waiting list for liver transplantation
- Patients with suspected HCC
- Patients with proven HCC awaiting treatment initiation or modification
- Patients showing moderate or severe side effects to treatment
There is limited but emerging data on HCC patients with COVID-19 being collected in registries. Based on these small samples of cancer patients there does seem to be evidence of more severe disease and a higher death rate particularly for those who have had recent chemotherapy, making infection avoidance imperative.
European Society of Medical Oncology (ESMO)
National Cancer Institute (NCI)
On April 17, 2020, NCI Director Norman E. Sharpless, MD reported on the joint meetings of the NCI Board of Scientific Advisors and NCI Advisory Board. NCI has focused resources for research, testing, and therapy development to address the COVID-19 pandemic. Accrual in NCI-funded cancer trials have been reduced by half, however, clinical trial continuity efforts, adapting trial design, and execution may keep research for cancer patients and research on cancer patients with COVID-19. That includes a “compassionate use” protocol for the drug tocilizumab (Actimra) in cancer patients with COVID-19 who have severe respiratory complications thought to be caused by a hyperactive immune response known as cytokine release syndrome.
NCI’s Cancer Information Service (CIS) can help answer questions that you or a loved one may have about COVID-19 or your care.
To reach the CIS:
- Call 1-800-4-CANCER (1-800-422-6237) Monday through Friday from 9:00 a.m. to 9:00 p.m. ET in English or Spanish. After business hours, recorded information is available.
- Online LiveHelp® chat offers online assistance in English and Spanish Monday through Friday from 9:00 a.m. to 9:00 p.m. ET.
Note as Transplant Patient-in-Chief
I was fortunate to receive medical care in the past two weeks – a simple surgical procedure, IBD medication infusion, and endoscopy – procedures that are impossible to do by telehealth. I appreciate the nurses, physicians, and techs, who reported for duty during this trying time and the health systems that reorganized and redesigned themselves to be able to ensure that complex and high-risk patients like me are able to safely receive care that keeps us stable and avoid the need for lengthier or more involved engagement with health care offices, clinics or hospitals. In areas that are not COVID-19 hotspots that have overwhelmed health systems and in which any exposure outside the sheltering in place at home risks contact with high rates of community spread, patients should expect that non-COVID-19 and COVID-19 care be delivered in parallel. If your clinic, lab site or hospital has not communicated their plan for delivering care ask the following questions:
- What is the COVID-19 rate in your area? Is the rate of infections still rising?
- Does the site have sufficient PPE to deliver care safely, including providing masks for patients?
- How are facilities being disinfected and at what intervals?
- Are patients being asked to fill out an exposure risk questionnaire ruling out travel to COVID-19 hotspots, local exposure, and symptoms prior to arrival?
- Is there a separate site or entrance for non-COVID patients?
- Are temperatures being taken for everyone entering?
- Are there staggered or scheduled patient appointment times to allow for physical distancing?
Stay safe, well, and connected.
Donna R. Cryer
Founder & CEO
Liver Transplant 1994 Johns Hopkins
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