COVID-19 Related Resources
**COVID-19 VACCINE GUIDANCE**
To help guide the community, DTRF reached out to our Medical Advisory Board member, Rashmi Chugh, MD, medical oncologist and researcher at the University of Michigan Health System, for her professional opinion on desmoid tumor patients and the COVID-19 vaccines.
Dr. Chugh’s full statement is as follows:
“I urge the desmoid tumor community to protect themselves and their loved ones with the COVID-19 vaccine. Based on available scientific evidence, there is no reason to suspect the COVID-19 vaccine would promote desmoid tumor growth or recurrence. The vaccine has been given to thousands of cancer patients safely, and the risks of contracting COVID-19 remains much, much higher than the risk of the vaccine. Please consider obtaining the vaccine and continue social distancing, wearing masks, and hand-washing so we can stay safe and continue the fight against desmoids together.”
Dr. Chugh’s research focus is on the development of new therapies in the management of sarcoma and desmoid tumors, conducting phase I clinical trials of novel therapies alone or in combination with standard cytotoxic therapy or targeted agents.
The DTRF supports Dr. Chugh’s assessment and we encourage patients and caregivers to bring any questions related to vaccines to your medical team or specialist.
Resources from The National Organization for Rare Disorders (NORD)
The National Organization for Rare Disorders (NORD) recently opened 2 COVID-19 Relief programs.
The COVID-19 Premium & Medical Relief Program
- Provides financial assistance for certain out-of-pocket costs associated with patient’s health insurance premiums
- Provides eligible uninsured and under-insured patients (for whom insurance has declined coverage for this expense) with financial support for out-of-pocket limited medical expenses such as:
- Medical visits & telehealth consults
- Laboratory & diagnostic testing
- Physical and/or occupational therapy and/or other physician prescribed therapy
- Durable medical equipment
- Medical supplies (tube feeding supplies, dressing kits, personal protective equipment)
A second program, the COVID-19 Critical Relief Program, provides support to rare disease patients and families facing financial challenges in affording critical, non-medical expenses.
Through this new program, NORD will provide financial assistance to eligible patients impacted by the COVID-19 pandemic, with financial assistance for unexpected or emergency, essential expenses such as:
- Unexpected utility expenses
- Communication expenses (e.g. phone, cell phone, internet)
- Emergency repairs to car, furnace, home or major appliances
- Assistance with travel and/or lodging logistics and expenses
- Rent or mortgage payment assistance
- Support for adaptive learning during school closures
Assistance may only be provided in one NORD COVID-19 Assistance Program: Critical Needs OR Premium & Limited Medical Assistance.
Eligibility requirements for both NORD programs:
- Patients must have a confirmed rare disease diagnosis
- Individuals must be US citizens or provide documentation of permanent US residency status; or resident of the United States for at least six months. Applicants must be willing to provide proof of residency such as a utility bill indicating their name and address
- Applicants must meet financial eligibility criteria (at or below 400% of the Federal Poverty Level guidelines (FPL) or demonstrate financial impact/mitigating circumstances due to the COVID-19 pandemic (examples include job loss, inability to work due to stay-at-home orders, school closures etc.)
- The need for which assistance is being sought must meet the critical needs, non-medical essential criteria
Those who wish to be considered for eligibility need to reach out to NORD at 203.242.0497 or COVID19assistance@rarediseases.org and provide the following:
- Full name
- A phone number where they can be reached
- The rare disease with which they/their family member has been diagnosed
- The direct manner in which they have been impacted by the COVID-19 crisis
It may be several days before NORD is able to reach out but please be assured that they will contact each individual seeking assistance through this program.
Resources from The Desmoid Tumor Research Foundation
Dr. Breelyn Wilky discusses considerations for desmoid tumor patients during the pandemic.
Resources from The Sarcoma Foundation of America
The Sarcoma Foundation of America hosts a panel of sarcoma specialists discussing sarcoma and coronavirus.
U.S. Centers for Disease Control
To access the most recent information on COVID-19 (aka: coronavirus), we recommend referencing the following websites: