“Patients are begging for me to get their medicines”
Q&A with Dr Greg Shay on the desperation of cystic fibrosis patients in Gaza
Dr Shay and *Habibi#1 at former Rantisi CF Clinic, 11/2/2022.
*Habibi is a term of endearment in Arabic
As further evidence emerges of the devastation caused by Israel’s siege on the al-Shifa hospital, and as an organisation focused on winning health justice, we continue to be horrified by the catastrophic threat to the right to health and life being experienced by Palestinians in Gaza right now. Just Treatment has consistently called for the safe release of hostages, and an immediate and permanent end to Israeli attacks which have caused overwhelming loss of civilian life, destroyed the healthcare system, and brought the population to the brink of famine in actions that bear the hallmarks of genocide.
Just Treatment is working in coalition with cystic fibrosis (CF) patients and families around the world to win access to lifesaving treatment for everyone. Children and young people living with CF in Gaza are facing heightened risks from the appalling, man-made humanitarian situation there.
This Q&A with American doctor, Greg Shay MD, gives an insight into the impact on these vulnerable young people. If you would like to help the Middle East Cystic Fibrosis Association's efforts to save the lives of Palestinians with CF, please donate here.
Please tell us who you are and what your link to CF in Palestine is.
I am a Pediatric Pulmonologist and Cystic Fibrosis Specialist from California. I was the Cystic Fibrosis Foundation USA Center director in Northern California for 30 years.
For the last ten years, I have been retired, primarily working in resource poor countries and refugee camps-Syrian, Rohingyan, Congo, Matamoros, Ukraine. I have been working with MedGlobal out of Chicago. We were asked to help set up a Cystic Fibrosis Center in Gaza, Palestine with state of the art therapies. Cystic fibrosis patients were dying much younger than those in other parts of the world and they lacked the proper medicines and the expertise to care for these patients. In 2022 I went on a self-funded volunteer mission to Gaza with MedGlobal to teach the two Pediatric Pulmonologists about state of the art care in Pediatric Pulmonology. I returned again in 2023 to help implement comprehensive improvements in CF patient care.
After two 2-week missions to Gaza and two cancelled trips due to past bombings, I have seen many of the CF patients and families there, and I feel they are my friends/family. I feel I have a responsibility to these patients even though I do not live there.
Obviously the situation is extremely dangerous for all civilians in Gaza right now, with constant Israeli bombings, and impending famine; but knowing what you do about CF - can you tell us why children and young people with the condition are at particular risk?
Habibi#2 at former Rantisi Hospital, 11/6/2022.
At baseline, patients with cystic fibrosis can not digest or absorb any nutrients from protein, carbohydrates or fat unless they take special prescription digestive enzymes. Patients with CF must take these pills before every meal and snack. Additionally, most people with cystic fibrosis must take in double the amount of daily calories as non CF patients due to increased energy expenditure for coughing, breathing, and fighting off the chronic mucus infection in their lungs.
The people with CF in Gaza have not had their pancreatic digestive enzymes, special fat soluble vitamins, and extra caloric snacks since about 1-2 months into the war. They started their famine four months ago and several have died from malnutrition. This is worsened in CF since lack of calories decreases muscle strength to cough out the thick green cups of productive mucous each day
Additionally, if you are malnourished, you can not fight off infection which is present all the time in CF.
Secondly, patients with cystic fibrosis sweat much more than nonaffected people. Consequently, they require extra hydration with clean fresh water and extra salt in their diet. They have faced a lack of potable water since the first month of the war.
Habibi #3 at former Nasser Hospital, 11/3/2022.
Thirdly, patients with CF must take special breathing treatments three to four times a day through an electric nebulizer. They take separate treatments: one to open up the lung passages, another to loosen the thick mucus in their lungs, and a third to inhale antibiotics to kill the bacteria in their mucus. All three are done three times a day.
However, with no electricity and most of their nebulizer machines buried under concrete rubble caused by Israeli bombing, they are unable to do breathing treatments. This means their lungs fill with mucus that eventually suffocates them to death, drowning in their own mucus. There have been no medicines for opening the lungs, loosening the mucous or killing the chronic bacteria since shortly after the attacks began.
Finally, just like anyone with severe lung disease, clean fresh air is essential for maintaining your oxygen levels. Concrete dust and toxic fumes from fires and bombings along with smoke from open cooking fires, present a formidable atmosphere to breathe.
Can you tell us about how you have seen patients in Gaza being affected?
So far we know of 13 patients who have died from their CF since the war started. These are children starving and suffocating to death. This does not include any families that may be buried under their bombed homes.
Patients are begging for me to get their medicines, water, food, and doctors who know how to care for them.
What needs to happen to save the lives of CF patients in Gaza right now - and what are the barriers to that happening?
Habibi#4 (age 14) at former Al Shifa Hospital, 11/7/2022.
Most of the medications and doctors going into Gaza at this time have been geared towards war trauma with surgical supplies. Most people with any type of chronic disease are not receiving their medicine.
The most important things for the patients with CF to receive are:
Potable water
Food nutrition with extra nutritional supplements-RUFT, Pediasure
CF pancreatic enzymes such as Creon
CF specific vitamins such as ADEK or DEKA
Salbutamol puffers to open the lungs and liquid medicine for nebulizers
Mucolytic medicines to loosen mucus such as hypertonic 7% saline
(once refrigeration is returned in this war torn country DNAse)Inhaled antibiotics such as TOBI nebules or TOBI spinhalers
Oral antibiotics such as augmentin, ciprofloxacillin, bactrim for intermittent infections of the lungs
Chronic oral zithromycin antibiotics to suppress infections in the lungs
Nebulizer machines
Genetic modulators for CF which none of the patients in Palestine have
Intravenous (IV) eftazadime and tobramycin for IV therapy
Ranitidine to improve effectiveness of enzymes
Whilst some of this can be achieved through increased aid as fighting continues, it is clear that the best chance we have to save these innocent young lives is for the bombing to stop, to secure an immediate and permanent ceasefire.
Thinking about CF patients in Gaza, what is your message to political leaders in the US, UK and Europe?
There can be no justification for any delay or equivocation - we need a ceasefire immediately, and Western leaders should have the images of cystic fibrosis patients suffering right now on their minds when they are making decisions - for example on whether or not to continue arming Israel.
People around the world mostly know of cystic fibrosis as a Northern European background caucasian disease that causes a severe morbidity and mortality. However, modern medications have increased the survival of CF patients from death at age 10 in 1976 to the mid 40's age in 2024. In fact, with newer CF gene modulators many of the patients do not need to rely as much on intense pulmonary medications and digestive enzymes. Affluent countries are able to provide these patients with excellent nutrition and quality of life.
Before the most recent war, CF patients in Gaza only had oral digestive enzymes, vitamins, and old-fashioned nebulized antibiotics for therapy. They have had none of the modern drugs available to CF patients from the last thirty years. Most of the patients in Gaza die by age 14 when CF patients commonly live long into their forties or fifties in the US and Europe. When this conflict ends the international community has an obligation to rebuild the health system and ensure every CF patient that survives has access to best in class treatment and care.
What should other actors, for example CF drug manufacturers such as Vertex, be doing right now?
Hopefully companies who make huge profits from paying western countries for CF drugs can donate part of their profits to supply medications for the dying poor patients with the same disease. We certainly have found that other medical supply and pharmaceutical companies have been generous to treat the Palestinian victims.
Please consider donating to support the urgent and vital work of MECFA as they try to get medicines, medical devices, and other essentials to CF patients in Gaza.