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Executive Director Jim Minow discusses the effect of COVID-19 on the Cure JM community.

Executive Director Jim Minow

Dear Cure JM Families,

It goes without saying, that for the foreseeable future, the COVID-19 pandemic will change the way we manage our lives. Our daily schedules and rhythms of life have been upended, and I imagine that in your life, the pressures and stress on you and your family have increased.

Many of you have added “home school teacher” to an already full plate, and as we all shelter-in-place, the routines of work, parenting, family life, friendship, fellowship, and health care are blurred, or in some cases, absent altogether. We’ve moved from lives of infinite possibilities to a contracted universe limited to the distance between our homes and the nearest grocery store.

Our youngest children are constantly underfoot, our tweens glued to their devices, and our college kids back home feeling cheated that, just as they were finding their independence, they are forced back home and again living with mom and dad’s rules. Parent or child, teen or tween or young adult, we are finding new ways to “family together.”  What other choice do we have?

At Cure JM, we embrace a culture of Family First. For most families, this would mean an inward focus to manage an unusual time of turbulence and stress. At Cure JM, we think of you as our extended family, and so during this challenging time, we want to be absolutely sure that we are doing all we can to provide the direction and information of most value to you and your JMer.

So, as I share with you what we are doing during this critical time, let me also ask for your thoughts and advice about what more or what else we might be doing. Are Cure JM’s priorities the right ones? Are you feeling well-served? This is the time to let us know, and I encourage you to write me at james.minow@curejm.org (or reply to this message) with your thoughts and ideas on how to best serve our families both during the COVID-19 crisis and after this crisis passes.

Finances

First, let me say that Cure JM’s finances are stable. The board has been a thoughtful steward of our resources, and we are able to honor our existing grant commitments for institutions whose work is ongoing. For the short term, fundraising revenues will be down significantly which could impact our ability to fund new grants in the immediate future.

Fundraising revenues are down for the simple reason that Chapter, Walk Strong and family fundraising leaders cannot carry on with fundraising events in the midst of the U.S. pandemic. Today, the very communities of friends and family, businesses, corporations, and associates that power our success are managing their own business and family priorities, and must do so before they can help again with ours. I'm confident that they will be with us over the long run when we all agree the time to restart our outreach is right.

Many of you have shared with me that you hope that time will be sooner rather than later. I hope so, too. In some ways, the timing relates to the current debate over opening the economy: the sooner we can start to feel that we are on the path to revival, the closer we will be to restarting our fundraising efforts.

Because our ability to fund the research to meet our mission depends on fundraising success, succeed we must. Revenue that is deferred for one, two, or even three months is not lost to us, it just comes later in the game. As the momentum shifts in our favor, we'll score the runs we need in the later innings.

Advocacy

You may recall that back in February I wrote to you about our work with the NIH and the FDA to fast track the approval for new or repurposed drugs that could be effective in treating juvenile myositis. Here in April we find ourselves in an Alice in Wonderland scenario where we are battling to preserve access to the treatments we have already for JM as they are being commandeered as a potential — but unproven — treatment for COVID-19. I’m speaking, of course, of hydroxychloroquine, which often goes by the brand name of Plaquenil.

If you have written your member of Congress about the shortage, thank you. If you completed the recent survey on hydroxychloroquine use, thank you. The results of that survey showed that among Cure JM families:

  • 37% reported difficulty in having hydroxychloroquine prescriptions filled for their children.
  • 28% reported that their pharmacy was out of hydroxychloroquine supply.
  • 49% reported that their pharmacist cautioned that their local supply could run out in the immediate future.

Results were reported from 35 states, Puerto Rico, and the District of Columbia.

Over the last two weeks I have written to the Commissioner of the FDA, as well as to the chairpersons of the boards of pharmacy of the largest states in the country. The letters urge them to put policies in place that will protect the supply of hydroxychloroquine to existing patients, especially our JM children. This week, I will write to additional states as well as follow-up with those who have already received our letter. You can find a copy of the letter here, and if you would like to write your own letter to your state board, you can find a list of contacts here.

Webinars and Telemedicine

with our Medical Advisory Board, we've been focusing effort on understanding the very best ways to help our clinicians deliver information to JM families and effectively conduct the practice of telemedicine.

We are also ramping up the number of webinars that we offer to our families. Last week, we presented two—one on maintaining emotional health in times of stress, and another on the process of transitioning from pediatric to adult care. You can find past webinars here. Each webinar is about one hour in length. We are planning a second webinar on emotional health in the coming weeks. Please note, in the interest of family privacy we do not record webinars addressing emotional health. Look for announcements of new webinars in the next two weeks.

In all likelihood, your medical provider has been in touch with you about telemedicine. We are currently assessing how healthcare practitioners are providing services during this crisis. Most have moved to telemedicine for what one might consider a regular non-urgent appointment. Obviously, there are certain muscle strength tests or lab tests that require blood draws and cannot be conducted through telemedicine. So, while efficient and safe, telemedicine visits are less than complete. Consequently, most practitioners are still seeing chronic or refractory (difficult to treat) cases in person.

Most providers that are gearing up telemedicine practices acknowledge that it is a bit of a learn as you go process. As one provider said recently, “In telemedicine we've done in two months what otherwise might have taken 10 years. Resistance to change evaporates when you have no other alternative.”

We don’t really know how long practicing through telemedicine will be with us, or even if it is here to stay. No doubt it will be a mainstay of healthcare delivery at children's hospitals as long as those hospitals believe there is a risk of COVID-19 transmission to or from visiting patients in the building and the waiting rooms. In the meantime, Cure JM is looking to ways we can partner with and meet the needs of pediatric rheumatology clinics across the country as they look to build the most effective telemedicine practices possible.

If you’ve been seen in a telemedicine environment, send us your feedback, both positive and negative. You can share your feedback by replying to this message. We’d love to hear both what worked and didn't work for you, and for ways, from the patient perspective, that telemedicine services could be improved. We will share that feedback anonymously with our Medical Advisory Board and pediatric rheumatologists in our Cure JM network.

Thank you, as always, for being one of our committed Cure JM families. As this is National Volunteer Week, I am reminded of just how important you are to our success and how meaningful your work is to the tens of thousands of families and children around the globe whose lives are improved because of your active involvement with Cure JM.

I look forward to our next update or seeing you at an upcoming webinar.

Take care and be safe.

Jim
Jim Minow
Cure JM Executive Director