By JoNel Aleccia April 6, 2020
After nearly 52 years of marriage, that was the hardest thing: being apart in this moment, too weak to care for each other, each alone with their anxiety and anguish.
I worried about my husband a lot, recalled Josie Taylor, 74, who fell ill a few days before George, 76. Yes, I was concerned about me, but I was more concerned about what was going to happen to him.
Despite their personal uncertainty, when a doctor approached the Taylors at their bedsides to ask if they would consent to join a study of an experimental drug to help experts learn to treat the devastating infection, each agreed.
My answer was absolutely yes, Josie said. My feeling was anything I can do to help. Even if youre stuck in an isolation room, this is affecting so many people and we have to do everything we can.
In late March, the Taylors were discharged from EvergreenHealth medical center, heading home a few days apart. They returned to their tidy white house in Everett, tired, worn and wondering if the clinical trial they had joined is the reason they survived the deadly disease.
After nearly 52 years of marriage, that was the hardest thing: being apart in this moment, too weak to care for each other, each alone with their anxiety and anguish.
I worried about my husband a lot, recalled Josie Taylor, 74, who fell ill a few days before George, 76. Yes, I was concerned about me, but I was more concerned about what was going to happen to him.
Despite their personal uncertainty, when a doctor approached the Taylors at their bedsides to ask if they would consent to join a study of an experimental drug to help experts learn to treat the devastating infection, each agreed.
My answer was absolutely yes, Josie said. My feeling was anything I can do to help. Even if youre stuck in an isolation room, this is affecting so many people and we have to do everything we can.
In late March, the Taylors were discharged from EvergreenHealth medical center, heading home a few days apart. They returned to their tidy white house in Everett, tired, worn and wondering if the clinical trial they had joined is the reason they survived the deadly disease.
The couple are among the first patients in the U.S. to recover from COVID-19 after agreeing to participate in a National Institutes of Health randomized controlled trial of remdesivir, an antiviral drug made by Gilead Sciences that once aimed to treat another infectious disease, Ebola.
The study is part of a surge in efforts to beat back the virus that as of Sunday evening had sickened more than 337,000 people in the U.S. and led to more than 9,600 known deaths.
You pray that you got the drug, said Josie. The fact that we both recovered so quickly? You hope thats the reason why.
But neither the Taylors nor Dr. Diego Lopez de Castilla, the 41-year-old physician heading the trial at the Kirkland, Washington, hospital, know now whether the couple received injections of remdesivir or an identical-looking placebo.
Nor do they know whether the investigational drug, designed to stop the virus from replicating, is effective at halting the disease. There are a half-dozen studies in progress across the globe testing remdesivir as a COVID-19 treatment.
At the same time, more than two dozen Phase 3 clinical trials are recruiting participants to study interventions to prevent or treat COVID-19. They range from a tuberculosis vaccine being tested on health care workers to a cancer drug that could prevent the deadly fluid buildup occurring in the lungs of COVID-19 patients.
Other drugs, including those used to treat rheumatoid arthritis and even gout are being tested to see if they reduce the bodys inflammatory response to the infection. A few studies aim to confirm whether treatments touted by President Donald Trump, the antimalarial drugs chloroquine and hydroxychloroquine, are indeed effective against COVID-19.
If any of the trials show overwhelming evidence of benefit or harm, they could be called off, with the drug in question accelerated to general use or halted.
So far, no drug appears to be a certain treatment for COVID-19. Early results regarding remdesivir are expected in late April. Officials with the World Health Organization and many media accounts have suggested the treatment could hold promise. But its too soon to say, said Lopez de Castilla.
I dont think we have enough data to be commenting, Lopez de Castilla said. I think its very premature. Were still enrolling patients in the trial.
Lopez de Castilla is steering clear of the political turmoil that has surrounded remdesivir and Gilead. The firm in March sought and received federal Food and Drug Administration approval for so-called orphan drug designation, but then asked the agency to rescind the designation after critics accused company officials of unfairly seeking a lucrative monopoly for the drug.
Orphan drug designation gives a manufacturer seven years of market exclusivity, a period that essentially bars competition. Consumer advocates criticized the designation because orphan drug status is aimed at products that target rare diseases, those that affect 200,000 people or fewer. Gilead received the status when U.S. cases were still hovering near 40,000 but were expected to rise far higher.
In the past two weeks, Gilead officials announced that, because of overwhelming demand, the company would no longer provide the drug on an individual compassionate-use basis to patients not enrolled in clinical trials and was shifting to a broader-access program.
For now, Lopez de Castilla is focused on the science, working to follow strict protocols set by the National Institute of Allergy and Infectious Diseases study expected to enroll 440 patients across 75 sites.
The double-blind trial calls for participants to receive the active drug or placebo for 10 days, and then to evaluate how they do based on a scale that moves from fully recovered to death. The drugs are given free to hospitals and trial patients. In a public letter March 28, Gilead chief executive Daniel ODay pledged that the company would work to ensure affordability and access.
Since Feb. 21, 40 U.S. sites have joined the Adaptive COVID-19 Treatment Trial, with Lopez de Castillas team enrolling among the most patients so far: at least 20 as of April 1.
We are a community hospital, he said. Although we dont have all the resources that bigger hospitals have, we do have amazing people here.
Still, it hasnt been easy. For weeks, EvergreenHealth was at the epicenter of the U.S. outbreak, treating dozens of patients from the Life Care Center nursing home in Kirkland, where nearly 40 patients have died. Overall, the hospital has treated nearly 300 COVID-19 patients since Feb. 28.
The patients enrolled in the trial are among the sickest, Lopez de Castilla said. Theyre those who are moderately to critically ill, including some who are unconscious and on ventilators. Obtaining consent to participate in a clinical trial from patients or families grappling with an emergency has been very challenging, he said.
One of the challenges is how to enroll a patient who is already intubated, he said. We do this through a family member, someone who can make medical decisions for the patient.
It can take hours to explain the procedure, describe the side effects which could include gastrointestinal problems or elevated liver enzymes and provide detailed information so the patient or their legal representative can make an informed decision.
Patients must understand that they could receive an unproven therapy, he said. And they need to know that, because the trial calls for half of the patients to receive the drug and half to receive a placebo, theres a 50% chance they wont actually receive the active drug.
One barrier has been that the trial paperwork is available only in English, which is not the first language of some patients. EvergreenHealth is working with the NIH to create at least one translation in Spanish.
Overall, about half of the patients Lopez de Castilla approached have said no.
For Josie Taylor, a former second-grade teacher who volunteers for social causes, the decision to join the trial was easy. It does have to be studied, she said. It cant be a knee-jerk reaction of Take any medication, without knowing what the results will be.
She and her husband, a retired banker, fell ill in early March, just weeks after moving from their home of 40 years to a new community 30 miles north of Seattle. Josie got sick first.
I went to the grocery store and came out, loaded the stuff in the car and realized I was very short of breath weirdly so, she recalled.
She ran a fever that night, called her doctor and went to the emergency room the next morning, where she was quickly placed in isolation.
George Taylor is a Vietnam War veteran who was affected by the defoliant Agent Orange used in that war. He has multiple health problems, including prostate cancer, heart disease and Parkinsons disease. Within a couple of days, he also fell ill.
George was sent to the ER and then to an isolation room next to his wifes. For more than a week, they were both seriously ill, on oxygen, uncertain about the future. It was 10 or 11 days, Josie said, adding wryly: Honestly, you lose track when youre having fun.
Contracting the novel coronavirus has been scary. But they were heartened by the support of family, friends, even people they barely knew. I came home to a brand-new place with brand-new neighbors and our yard had been mowed and edged, Josie said.
Now that theyre both home, the Taylors are gradually getting back to normal. Josie still speaks slowly, pausing to catch her breath between words. She said she hopes her experience underscores the seriousness of the crisis.
Im hoping and praying that this drug helps a lot of people, she said. Its not an old persons issue. Its an every persons issue.
The couple are among the first patients in the U.S. to recover from COVID-19 after agreeing to participate in a National Institutes of Health randomized controlled trial of remdesivir, an antiviral drug made by Gilead Sciences that once aimed to treat another infectious disease, Ebola.
The study is part of a surge in efforts to beat back the virus that as of Sunday evening had sickened more than 337,000 people in the U.S. and led to more than 9,600 known deaths.
You pray that you got the drug, said Josie. The fact that we both recovered so quickly? You hope thats the reason why.
But neither the Taylors nor Dr. Diego Lopez de Castilla, the 41-year-old physician heading the trial at the Kirkland, Washington, hospital, know now whether the couple received injections of remdesivir or an identical-looking placebo.
Nor do they know whether the investigational drug, designed to stop the virus from replicating, is effective at halting the disease. There are a half-dozen studies in progress across the globe testing remdesivir as a COVID-19 treatment.
At the same time, more than two dozen Phase 3 clinical trials are recruiting participants to study interventions to prevent or treat COVID-19. They range from a tuberculosis vaccine being tested on health care workers to a cancer drug that could prevent the deadly fluid buildup occurring in the lungs of COVID-19 patients.
Other drugs, including those used to treat rheumatoid arthritis and even gout are being tested to see if they reduce the bodys inflammatory response to the infection. A few studies aim to confirm whether treatments touted by President Donald Trump, the antimalarial drugs chloroquine and hydroxychloroquine, are indeed effective against COVID-19.
If any of the trials show overwhelming evidence of benefit or harm, they could be called off, with the drug in question accelerated to general use or halted.
So far, no drug appears to be a certain treatment for COVID-19. Early results regarding remdesivir are expected in late April. Officials with the World Health Organization and many media accounts have suggested the treatment could hold promise. But its too soon to say, said Lopez de Castilla.
I dont think we have enough data to be commenting, Lopez de Castilla said. I think its very premature. Were still enrolling patients in the trial.
Lopez de Castilla is steering clear of the political turmoil that has surrounded remdesivir and Gilead. The firm in March sought and received federal Food and Drug Administration approval for so-called orphan drug designation, but then asked the agency to rescind the designation after critics accused company officials of unfairly seeking a lucrative monopoly for the drug.
Orphan drug designation gives a manufacturer seven years of market exclusivity, a period that essentially bars competition. Consumer advocates criticized the designation because orphan drug status is aimed at products that target rare diseases, those that affect 200,000 people or fewer. Gilead received the status when U.S. cases were still hovering near 40,000 but were expected to rise far higher.
In the past two weeks, Gilead officials announced that, because of overwhelming demand, the company would no longer provide the drug on an individual compassionate-use basis to patients not enrolled in clinical trials and was shifting to a broader-access program.
For now, Lopez de Castilla is focused on the science, working to follow strict protocols set by the National Institute of Allergy and Infectious Diseases study expected to enroll 440 patients across 75 sites.
The double-blind trial calls for participants to receive the active drug or placebo for 10 days, and then to evaluate how they do based on a scale that moves from fully recovered to death. The drugs are given free to hospitals and trial patients. In a public letter March 28, Gilead chief executive Daniel ODay pledged that the company would work to ensure affordability and access.
Since Feb. 21, 40 U.S. sites have joined the Adaptive COVID-19 Treatment Trial, with Lopez de Castillas team enrolling among the most patients so far: at least 20 as of April 1.
We are a community hospital, he said. Although we dont have all the resources that bigger hospitals have, we do have amazing people here.
Still, it hasnt been easy. For weeks, EvergreenHealth was at the epicenter of the U.S. outbreak, treating dozens of patients from the Life Care Center nursing home in Kirkland, where nearly 40 patients have died. Overall, the hospital has treated nearly 300 COVID-19 patients since Feb. 28.
The patients enrolled in the trial are among the sickest, Lopez de Castilla said. Theyre those who are moderately to critically ill, including some who are unconscious and on ventilators. Obtaining consent to participate in a clinical trial from patients or families grappling with an emergency has been very challenging, he said.
One of the challenges is how to enroll a patient who is already intubated, he said. We do this through a family member, someone who can make medical decisions for the patient.
It can take hours to explain the procedure, describe the side effects which could include gastrointestinal problems or elevated liver enzymes and provide detailed information so the patient or their legal representative can make an informed decision.
Patients must understand that they could receive an unproven therapy, he said. And they need to know that, because the trial calls for half of the patients to receive the drug and half to receive a placebo, theres a 50% chance they wont actually receive the active drug.
One barrier has been that the trial paperwork is available only in English, which is not the first language of some patients. EvergreenHealth is working with the NIH to create at least one translation in Spanish.
Overall, about half of the patients Lopez de Castilla approached have said no.
For Josie Taylor, a former second-grade teacher who volunteers for social causes, the decision to join the trial was easy. It does have to be studied, she said. It cant be a knee-jerk reaction of Take any medication, without knowing what the results will be.
She and her husband, a retired banker, fell ill in early March, just weeks after moving from their home of 40 years to a new community 30 miles north of Seattle. Josie got sick first.
I went to the grocery store and came out, loaded the stuff in the car and realized I was very short of breath weirdly so, she recalled.
She ran a fever that night, called her doctor and went to the emergency room the next morning, where she was quickly placed in isolation.
George Taylor is a Vietnam War veteran who was affected by the defoliant Agent Orange used in that war. He has multiple health problems, including prostate cancer, heart disease and Parkinsons disease. Within a couple of days, he also fell ill.
George was sent to the ER and then to an isolation room next to his wifes. For more than a week, they were both seriously ill, on oxygen, uncertain about the future. It was 10 or 11 days, Josie said, adding wryly: Honestly, you lose track when youre having fun.
Contracting the novel coronavirus has been scary. But they were heartened by the support of family, friends, even people they barely knew. I came home to a brand-new place with brand-new neighbors and our yard had been mowed and edged, Josie said.
Now that theyre both home, the Taylors are gradually getting back to normal. Josie still speaks slowly, pausing to catch her breath between words. She said she hopes her experience underscores the seriousness of the crisis.
Im hoping and praying that this drug helps a lot of people, she said. Its not an old persons issue. Its an every persons issue.
We encourage organizations to republish our content, free of charge. Heres what we ask:
You must credit us as the original publisher, with a hyperlink to our khn.org site. If possible, please include the original author(s) and Kaiser Health News in the byline. Please preserve the hyperlinks in the story.
Its important to note, not everything on khn.org is available for republishing. If a story is labeled All Rights Reserved, we cannot grant permission to republish that item.
Have questions? Let us know at KHNHelp@kff.org
- Tango Parkinson's Therapy (Washington U. in St. Louis) - May 7th, 2011 [May 7th, 2011]
- Parkinson's Disease Treatment-Exercise Program-Part 2 of 4 - May 14th, 2011 [May 14th, 2011]
- Parkinson's Disease Stem Cell Treatment - Part 2 - May 21st, 2011 [May 21st, 2011]
- Deep Brain Stimulation treatment for Parkinson's disease - May 22nd, 2011 [May 22nd, 2011]
- Parkinson's Disease Treatment-Exercise Program-Part 4 of 4 - May 24th, 2011 [May 24th, 2011]
- James, Parkinson's disease, after stem cell treatment at Tiantan Puhua Hospital Beijing - May 30th, 2011 [May 30th, 2011]
- Parkinson's Disease Stem Cell Treatment - Part 1 - May 30th, 2011 [May 30th, 2011]
- Parkinson's Disease Treatment -- Mayo Clinic - June 2nd, 2011 [June 2nd, 2011]
- When should I start treatment if I have Parkinson's Disease? - June 3rd, 2011 [June 3rd, 2011]
- parkinson-treatment-with-cupping-4.flv - June 3rd, 2011 [June 3rd, 2011]
- New treatment options for Parkinson's Disease feat. Nashville Predators coach Brent Peterson - June 8th, 2011 [June 8th, 2011]
- Speech Treatment in Parkinson disease: Sharon Kha's Story - June 8th, 2011 [June 8th, 2011]
- How you can help cure Parkinson's - June 9th, 2011 [June 9th, 2011]
- TV9 - LADIES CLUB : "PARKINSON DISEASE" - CAUSE, SYMPTOMS - June 9th, 2011 [June 9th, 2011]
- Parkinson's Treatment: Case #1 - June 12th, 2011 [June 12th, 2011]
- parkinsons cure - June 17th, 2011 [June 17th, 2011]
- A Parkinson Patient Finds their Miracle. FCR Treatment helps Parkinson's Disease. - July 3rd, 2011 [July 3rd, 2011]
- Parkinson's Treatment: Case #2 - July 15th, 2011 [July 15th, 2011]
- TMJ Treatment Helping with Parkinson's Symptoms Dr. Gary Demerjian Burbank, California - July 15th, 2011 [July 15th, 2011]
- Parkinson's Treatment at Ta'ir Laser Center testimonial - July 16th, 2011 [July 16th, 2011]
- Parkinson's Disease client pre and post treatment - July 17th, 2011 [July 17th, 2011]
- Parkinson's Disease: Diagnosis, Causes and Treatment. Part 2 - July 18th, 2011 [July 18th, 2011]
- Parkinson's Disease: Diagnosis, Causes and Treatment part4 - July 18th, 2011 [July 18th, 2011]
- Glutathione for Parkinson's Disease. Learn why it helps symtoms - July 18th, 2011 [July 18th, 2011]
- Parkinson's Disease: Diagnosis, Causes and Treatment. - July 19th, 2011 [July 19th, 2011]
- parkinson-treatment-with-cupping-1.flv - July 20th, 2011 [July 20th, 2011]
- 7.30 - a treatment for Parkinson's Disease can cause problem gambling - July 27th, 2011 [July 27th, 2011]
- Parkinson's Disease Symptoms Improve with Non-Surgical TMJ Treatment: Dr. Gary Demerjian - July 29th, 2011 [July 29th, 2011]
- Werth Parkinson Centre, Daniella - Treatment - August 4th, 2011 [August 4th, 2011]
- 6.30 - Parkinson's treatment - August 19th, 2011 [August 19th, 2011]
- MDTV: New Drug Treatments for Parkinson's Disease - September 10th, 2011 [September 10th, 2011]
- Pakistan Parkinson's Disease patient Treatment, in chennai Surgery hospital - DINAMALAR - September 23rd, 2011 [September 23rd, 2011]
- Parkinson's treatment gives life back - October 2nd, 2011 [October 2nd, 2011]
- Parkinson Doctor Sarasota Discusses Parkinson's Disease Treatments - Video - October 15th, 2011 [October 15th, 2011]
- New treatments for Parkinson's disease - pt 1 - Video - October 16th, 2011 [October 16th, 2011]
- Parkinson's Disease Treatment - Year and a Half Later... - Video - October 19th, 2011 [October 19th, 2011]
- Still Life: The Search for a Parkinson's Cure - Video - October 22nd, 2011 [October 22nd, 2011]
- Can Exercise Treat Parkinson's? - Video - October 30th, 2011 [October 30th, 2011]
- Parkinsons Treatments | Symptoms Parkinsons - Video - November 2nd, 2011 [November 2nd, 2011]
- Symptoms - November 3rd, 2011 [November 3rd, 2011]
- Revolutionary Treatment for Parkinson's - Video - November 4th, 2011 [November 4th, 2011]
- Herbal Treatment for Parkinsons disease and recovery - Video - November 7th, 2011 [November 7th, 2011]
- Early Diagnosis and Treatment of Parkinson's Disease - Video - November 10th, 2011 [November 10th, 2011]
- Parkinson's Disease Treatment (part 1 of 4) at Penn Medicine - Video - November 15th, 2011 [November 15th, 2011]
- Parkinson's Disease Treatment - Video - November 18th, 2011 [November 18th, 2011]
- MDTV: Parkinson's Disease: Treating Off Times - Video - November 20th, 2011 [November 20th, 2011]
- parkinson-treatment-with-hijamah-therapy.3gp - Video - November 24th, 2011 [November 24th, 2011]
- parkinson-treatment-with-cupping-2.flv - Video - December 3rd, 2011 [December 3rd, 2011]
- Parkinsons Antioxident treatment before with Dr. Offutt.MOV - Video - December 7th, 2011 [December 7th, 2011]
- Teva Presenting Data on MS and Parkinson's Disease Treatments - Video - December 7th, 2011 [December 7th, 2011]
- LSVT® LOUD Treatment Benefits Parkinson's Disease Patient -- Hendricks Regional Health - Video - December 14th, 2011 [December 14th, 2011]
- Parkinson's Cure - Dating - Video - December 21st, 2011 [December 21st, 2011]
- Parkinson's Treatment part-2 - Video - December 29th, 2011 [December 29th, 2011]
- Parkinson's Treatment - Video - January 1st, 2012 [January 1st, 2012]
- Parkinson's Treatment - Deep Brain Stimulation - Video - January 2nd, 2012 [January 2nd, 2012]
- Parkinson's cure with out medicine - Video - January 10th, 2012 [January 10th, 2012]
- Parkinson's Disease and The Argentine Tango - Video - January 11th, 2012 [January 11th, 2012]
- Parkinson treatment shows positive results in clinical testing - Video - January 15th, 2012 [January 15th, 2012]
- Parkinson's Disease Treatment - Patient Testimony "Lad" - Video - January 27th, 2012 [January 27th, 2012]
- Parkinson - Video - January 27th, 2012 [January 27th, 2012]
- parkinson-treatment-with-cupping-3.flv - Video - January 28th, 2012 [January 28th, 2012]
- Parkinson's Disease: Balance, Gait (Walk) and Tremors Improve with New Non-Surgical Treatment Part 2 - Video - January 29th, 2012 [January 29th, 2012]
- Researchers visualize the development of Parkinson's cells - January 31st, 2012 [January 31st, 2012]
- NPH diagnosis in San Tan Valley man returns him to normal life - January 31st, 2012 [January 31st, 2012]
- Laser targeting could help fight Parkinson's - February 1st, 2012 [February 1st, 2012]
- Study of live human neurons reveals Parkinson's origins - February 7th, 2012 [February 7th, 2012]
- Lauren Sciences LLC awarded MJFF grant to develop a V-SmartTM therapeutic for Parkinson's disease - February 7th, 2012 [February 7th, 2012]
- "Biochemistry", Advances in Parkinson's Disease Treatment - Video - February 7th, 2012 [February 7th, 2012]
- Parkinson's Disease Symptoms Improve with Non-Surgical TMJ Treatment: Part 2 - Video - February 7th, 2012 [February 7th, 2012]
- Treatment of Parkinson's Disease Symptoms - Video - February 7th, 2012 [February 7th, 2012]
- Parkinson Disease - Surgical Treatment - Video - February 8th, 2012 [February 8th, 2012]
- MediGait Announces: GaitAid Device for Parkinson's Disease Shows Significant Step-initiation Improvement in New Trial ... - February 14th, 2012 [February 14th, 2012]
- Tai Chi Makes Parkinson’s Patients Steadier on Feet, Study Says - February 14th, 2012 [February 14th, 2012]
- Cleveland Clinic Joins 23andMe in the Search for Genetic Clues to Parkinson's Disease - February 14th, 2012 [February 14th, 2012]
- Cleveland Clinic to Recruit Parkinson's Patients for 23andMe - February 14th, 2012 [February 14th, 2012]
- Fairhope Parkinson's patient enters film in contest to awareness of disease - February 15th, 2012 [February 15th, 2012]
- Tai Chi may help Parkinson's patients regain balance - February 16th, 2012 [February 16th, 2012]
- Weight Training May Help Parkinson's Patients Retain Function - February 17th, 2012 [February 17th, 2012]
- Parkinson's Disease and Exercise: How Much Is Beneficial? - February 17th, 2012 [February 17th, 2012]
- Study shows exercise may help Parkinson's patients - February 17th, 2012 [February 17th, 2012]