CFV4L: a tiny organization with a giant heart and global reach
This remarkable organization unofficially was born when Rod Spadinger, co-founder of CFV4L, sent his therapy vest to another patient on January 25, 2020, after he had a double lung and liver transplant and no longer needed it. Out of that simple act of generosity grew an organization that has served 103 patients in 30 countries amidst the worst global pandemic in modern times, worldwide supply shortages, and historic domestic inflation. CFV4L’s mission is twofold: to offer CF patients, post-transplant patients, and surviving loved ones an opportunity to extend someone else’s life by donating their unused equipment so that we can ship it to CF patients with limited or restricted access to life saving medical equipment. There are an estimated 162,000 CF patients globally and 30,000 in the US. The U.S. is one of the only countries in the world whose government insurance programs as well as most private insurance plans cover both modulators and lung transplants. Approximately 90% of CF patients can significantly benefit from modulators and those that do report not needing their vests for airway clearance. CF patients that are post-transplant are also not in need of their vests or other life-saving therapy devices (nebulizer compressors, nebulizer cups, and personal oxygen concentrators) so we believe that there are approximately 15,000-20,000 unneeded vests and critical medical devices in circulation. To put that in perspective, if we collect and ship those unused vests to where they are needed the most, we could meet the demand of nearly 20% of the projected 100,000 CF patients around the world who are unable to afford or have no access to this life saving equipment and where neither modulators nor transplants are an option.
By all rights, this organization should never have survived like the patients who started it who outlived their life expectancies five-fold. Nevertheless, CFV4L not only survived but even thrived in its short 23 months of operation (501-c established on 6/29/2020) despite unprecedented challenges and seemingly overwhelming hurdles, including:
50% of recipients have significant language barriers.
The organization does not have a dedicated, reliable supply source for its inventory, but rather is completely dependent on continuous, regular generosity of donors.
Co-founders themselves, who have CF, are unable to come into direct contact with any of the equipment due to infection transmission restrictions so that all 300 pieces of donated equipment have to be sterilized and disinfected before they can be handled by us or our recipients by the Operations Manager (Co-founder’s wife, Mary).
Shipping and taxes to deliver one piece of equipment costs upwards of four times the cost of the equipment which based on our annual should have restricted us six shipments per year.
It has a shoestring annual operating budget of approximately $55 k.
We employ several strategies to overcome language barriers, including recruiting friends, family, health professionals (mostly physicians) connected to the recipient themselves and even engage other recipients to assist in translation. Additionally, we recently hired a social media consultant to expand our reach which will hopefully grow our recipient and donor base as well as broaden our growing network of supporters and advocates around the world to help us address our significant, frequent language barriers. On the rare occasion that we are unable to find an interpreter our customer relations department (co-owner Rod Spadinger) has literally spent hours communicating with some of our recipients utilizing nothing more than Google translate to complete a shipment. Although we have a large and continually growing donor base that has thus far provided us with a steady stream of equipment, we are always seeking to grow our donor base. Approximately one third of our donated equipment is inviable due to improper functioning, incompatible electrical current requirements, unreliability of type or brand, or irregular/unusable size so in order to maintain our pace of 8-10 shipments per month we need to receive a minimum of 15 pieces of equipment per month. Other than posting about our successes and recipient testimonials on various social media platforms to get the word out to our donors, we offer to pay 100% of the shipping costs for equipment sent from anywhere in the continental US or its territories to our warehouse in New York.
In the first year of operation, we used to pay for 100% of the shipping costs to directly ship equipment from our warehouse to any location in the world. However, after having to halt operations completely several times in the first year due to insufficient funds we began to slowly build a now formidable network of supporters who travel internationally and are willing to deliver our equipment; some even offer to pay Fedex or UPS directly to fully or partially fund deliveries.
We have set the goal of shipping 144 vests in the next 12 months which will require us to scale up our operations so that we are pushing 12 vests and/or other critical equipment per month out the door. This will require a growth of 33 percent in charitable giving, increasing our equipment donations from 10-15 pieces per month to 15-20 pieces per month, and further streamlining our fulfillment operations. Nevertheless, we are confident that we will meet our goal of serving 144 additional patients this year because of the passion and generosity of our supporters and donors all over the world.
From Co-Founder: Mark Tremblay