Coronavirus Disease 2019 (COVID-19) Updates

 

TSC/LAM Virtual Town Hall: Moving On From Shelter In Place

Updated May 28, 2020

The LAM Foundation and the Tuberous Sclerosis Alliance co-hosted the TSC/LAM Virtual Town: Moving On From Shelter In Place. This 1-hour online presentation featured the following speakers:

Living with COVID-19: Framing the Guidelines and What Individuals with TSC Need to Know to Manage Neurological Health During Phased Re-Opening 

Peter Crino, MD, PhD, University of Maryland School of Medicine

What LAM Patients Need to Know to Minimize Risk During Phased Re-Opening

Frank McCormack, MD, University of Cincinnati College of Medicine

Managing Kidney-Related Aspects of TSC and LAM to Minimize Risk During Phased Re-Opening

John Bissler, MD, St. Jude Pediatrics Research Hospital & Le Bonheur Children’s Hospital

Click here to watch the TSC/LAM Virtual Town Hall. 


The LAM Foundation COVID-19 Recommendations and Community Questions & Answers

Updated May 15, 2020

The LAM Foundation is closely monitoring the rapidly evolving developments regarding the COVID-19 pandemic. As the United States and other countries around the world begin to take initial steps towards easing the stay-at-home restrictions, it is important to be aware of the continuing risk that COVID-19 poses to patients with chronic lung disease. LAM patients should continue to exercise caution and remain vigilant during this phase of responsible reopening.

Click here to visit the COVID-19 Community Questions & Answers webpage. 

Click here to download a PDF of the LAM Foundation COVID-19 Recommendations and Community Questions & Answers.


Research Survey for Rare Disease Patients about Impacts of COVID-19

Updated May 12, 2020

Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families. Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases.

To complete the survey or learn more, visit the study page here. Questions? Email the study team at rd.covid19@cchmc.org.


NIH Update 

Updated April 2, 2020

The NIH LAM team is teleworking but not seeing LAM patients at this time. The team is contacting the LAM patients individually. If you are in the NIH LAM protocols and have not heard from the team or have questions for the team, please contact them by phone (303)496-3632. Dr. Moss, Mary Haughey, Pauline Barnes, and Tat'Yana Worthy will be monitoring the phone for messages. The Nurse Practitioners, Amanda Jones and Patricia Williams are available by email.

The NIH team can be reached by contacting (303)496-3632.


COVID-19 Protecting Your Family - Dr. David Price 

Updated April 2, 2020

Dr. David Price of Weill Cornell Medical Center in New York City shares information in a Zoom call on March 22 with family and friends on empowering and protecting families during the COVID-19 pandemic. 

Click here to watch the entire Zoom video.


National Health Council - COVID-19 Relief Legislation

Updated March 26, 2020

The following legislative update has been provided by the National Health Council  

Two rounds of relief legislation have been passed. To get an overview of the policies already in place, please see the one-page information sheet prepared on March 18. The debate over the third, and largest, stimulus package is still ongoing. Senate leadership introduced legislation, S. 3548 Coronavirus Aid, Relief, and Economic Security (CARES) Act. After negotiations with Democrats broke down, the bill failed two key procedural votes.  

We rallied the patient community on a letter with more than 215 organizations, asking for inclusion of nonprofit organizations in business relief efforts and increasing charitable giving. Because of these efforts, nonprofits are included in the bill, and there is now significant momentum for improvement. 

In response to our lobbying, Senators James Lankford (R-OK) and Jeanne Shaheen (D-NH) introduced an amendment to increase charitable giving by raising the above-the-line deduction threshold to $4000 for individuals and $8000 for married couples. The NHC and other nonprofit leaders were able to get more than 1,500 organizations to endorse the amendment and we understand this got the attention of the Senate and greatly increased the likelihood of its inclusion in a final package.  

Read the entire COVID-19 legislative update here.  


Centers for Medicare & Medicaid Services - O2 Certification Waiver Request 

Updated March 25, 2020

In an ongoing attempt to continue to advocate for patient access to oxygen, The LAM Foundation is proud to be one of nine organizations issuing a letter requesting that the Center for Medicare & Medicaid Services (CMS) provide a waiver to modify the certification and recertification requirements for Home Use of Oxygen. 

The following update has been provided by the Pulmonary Fibrosis Foundation  

Certification and recertification for supplemental oxygen are significant problems for Medicare patients during the COVID-19 crisis due to the requirements for in-person testing. We are requesting a waiver for these requirements during the COVID-19 emergency. Patients with underlying medical conditions that require supplemental oxygen are extremely vulnerable during the COVID-19 pandemic. It is critical that patients who need oxygen at home receive this benefit without disruption. The LAM Foundation, along with 8 additional organizations, have recently requested that the Center for Medicare & Medicaid Services (CMS) provide a waiver to modify the certification and recertification requirements for Home Use of Oxygen during the COVID-19 emergency, at least through July 15, 2020.  

Read the entire letter of waiver request here.  


Mental Wellness Resources: The LAM Foundation Wellness Portal

Updated March 23, 2020

In these times, we could all use a reminder of the importance of staying mentally, emotionally, and psychologically well. The LAM Foundation Wellness Portal was created for this purpose—a place for LAM patients to access content and resources for mental wellness needs including video & MP3 series on mindfulness, movement, and meditation. Join Stacy Sims, a mind-body educator, and Dr. Sian Cotton, Director at the Center for Integrative Health and Wellness from the University of Cincinnati, as they lead you through these mindfulness exercises. 

Click here to visit The LAM Foundation Wellness Portal. 


TSC/LAM Virtual Town Hall: A COVID-19 Update 

Updated March 20, 2020

Peter Crino, MD, PhD, University of Maryland School Aof Medicine, Frank McCormack, MD, University of Cincinnati School of Medicine, Darcy Krueger, MD, PhD, Cincinnati Children’s Hospital Medical Center, and John Bissler, MD, St. Jude Pediatrics Research Hospital share considerations for impact of COVID-19 on management of TSC and LAM. Additionally, Spanish subtitles are available by clicking settings on the video and selecting "Spanish (Latin America)" under Subtitles/CC.

Click here to watch the TSC/LAM Virtual Town Hall. 


The LAM Foundation COVID-19 Recommendations

Updated March 18, 2020

The LAM Foundation is closely monitoring the rapidly evolving developments regarding COVID-19 and implications for the LAM community. The Medical and Scientific Advisory Board of The LAM Foundation has developed the following guidance recommendations.

Click here to download a PDF of the LAM Foundation COVID-19 Recommendations.


2020 International LAM Research Conference & LAMposium CANCELLED 

Updated March 5, 2020

It is with deep regret that The LAM Foundation has made the decision to cancel the 2020 International LAM Research Conference and LAMposium in Cincinnati, Ohio, April 30 - May 3, due to the evolving worldwide COVID-19 outbreak. 

Click here for more details regarding this decision and a list of Frequently Asked Questions.

 


Additional Resources:

American Thoracic Society Patient Information Sheet

The CDC: Coronavirus Disease 2019 (COVID-19)

Cystic Fibrosis Foundation

Tuberous Sclerosis Alliance 

Johns Hopkins COVID-19 Global Cases Map