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BBC – The Future – The Unjustified Noise of Stem Cell Therapies



Jay Shetty is 8 years old. He is smart and bright, says his mother, Shilpa, even if he can't do everything his younger brother can. "Jay doesn't sit or use his hands a lot. He is non-verbal and we don't know how well he can see him, "she says. "But he plays with us and tries to copy everything that his younger brother Kairav ​​does."

Jay has cerebral palsy. In his early years, Shilpa was desperate to find something that could help him. Searching the internet late every night, she read about a stem cell test at Duke University in North Carolina, but Jay was ineligible. When Kairav ​​was born in 2015, Shilpa and her husband kept the umbilical cord of their younger son, which is rich in stem cells in the blood, hoping for another experience. It happened and this time the children with blood from brothers and relatives could participate. Was she worried about the risks to Jay? "It was not invasive and it couldn't really hurt." To raise the treatment bill for £ 1

5,000, they supplemented the money they had already raised for private physiotherapy and personal hydrotherapy and additional fundraising boost, backed from a cable bank in which blood was stored from Kairav.

Cerebral palsy is a group of lifelong conditions that affect movement and coordination. In Jay's case, Shilpa explains, there were complications during his birth that led to the condition. There is no cerebral palsy, but physiotherapy, speech therapy and occupational therapy can all help with some symptoms. However, Shilpa hoped that J's stem cell therapy – a two-hour infusion into his veins – would bring benefits far beyond anything they had tried before.

We all have stem cells – these are cells of sorting blocks, the ability to develop in a wide range of specialized cell types, such as muscle, skin or brain cells. Not only do stem cells replenish our old cells, they also begin to work to repair and replace damaged tissue. As a result, they have been likened to our own army of microscopic doctors, but this army is relatively small.

The excitement surrounding stem cell therapy revolves around the ability to grow more of these cells in the laboratory so that they can be used to produce new tissue, replace damaged cells, and unravel disease mechanisms.

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So far, researchers have focused mainly on the development of two different types of stem cells: embryonic and adult stem cells. Embryonic stem cells that are derived from a growing embryo have the natural advantage of being able to engender any other cell in the body, an attribute known as pluripotency. But some people have raised ethical concerns about the use of embryos in extracting these stem cells – problems that are circumvented by the use of stem cells collected from adult tissues. Adult stem cells are not naturally pluripotent, which means that they tend to be more specialized, and so can only develop in a narrower range of cell types. However, they can be reprogrammed to regain this flexibility in development.

Stem cell therapies certainly hold promise for certain disorders. Proven and licensed stem cell treatments already exist for blood and immune conditions such as leukemia, lymphoma and myeloma. It is also approved in some countries for chemical burns of the eyes.

The hopes of using stem cells to treat other disorders have inspired many new clinical trials and have triggered "stem cell tourism" centered in Ukraine, Panama and Thailand. By 2018, there were more than 432 US-based businesses in the 716 clinics involved in direct marketing of stem cell treatments.

These clinics universally share one characteristic: eye watering fees – and even trials like the one at Duke

It is here that crowdfunding comes from itself. A recent study from the Journal of the American Medical Association identified 408 US cancer treatment campaigns with YouCaring and GoFundMe, with more than $ 7 million and 13,050 donor pledges. Clinics often actively promote these campaigns: one of Northwestern Medicine has a manual on the "recruitment method."

Campaigns often underestimate or miss potential risks:

"It's so simple and quick and with only minimal side effects," says one page trying to raise funds for a person with Parkinson's.

] "Most importantly, it has been shown to slow the development of the disease without any side effects," describes another, raising funds for a person with amyotrophic side effect sclerosis (ALS), a common form of motor neuron disease.

Only 26 of these 408 campaigns mention "risk" and even then as risk free or low risk compared to alternative treatments.

Understandably, campaigns can underestimate the dangers – donors may not contribute otherwise. But these cases tell another story:

  • In 2017, Doris Tyler, a 77-year-old former music teacher, raised money from GoFundMe to cover stem cell treatment in Georgia (USA) for the treatment of age-related macular degeneration (ARMD) ). "We love you, Doris!" Wrote one supporter. Prior to treatment, she was able to read books in large print and orient herself at home. Tyler is now almost blind: "When I wake up in the morning, one of the hardest things is opening my eyes and seeing that everything is still dark. And it will be so until I fall asleep. "At least three ARMD patients lost their sight after stem cell treatment in Florida in 2015.
  • At least seventeen patients were hospitalized in the last year in the United States after umbilical cord blood injections. The Centers for Disease Control confirmed a series of bacterial infections. Most of these patients were treated in orthopedic, chiropractic and pain clinics and injected into the spine, knees, and shoulders.
  • After a stroke in the early 1960s, Jim Glass sought stem cell treatment in Argentina, China and Mexico (cost: $ 200,000). Subsequently, a spinal cord tumor paralyzed his right leg (the blow had already paralyzed his left leg). DNA analysis shows that the tumor originated from the injected stem cells.
  • A 9-year-old boy develops multiple tumors of the brain and spinal cord after stem cell transplantation. Pathological analysis confirmed that the spinal tumor contained cells from at least two donors.

When crowdfunding campaigns fail to reference the risk, this may be because the clinics themselves are barely transmitting it. Paul Knoepfler, a biomedical science scientist at the University of California, Davis Medical School, attended an independent educational seminar at one clinic (used to recruit patients, promising large sign-up discounts). The staff, mostly dressed in medical scrubs, neglected to mention any potential adverse events related to stem cell transplantation. However, the public received an application form for a credit to complete. Knoepfler writes that the experience is "more like attending a compelling entertainment show or something on a TV shopping network than an educational seminar."

In addition to underestimating the risks of these therapies, fundraising campaigns sometimes overestimate its benefits.

"Stem cell therapy has helped thousands of children with autism," says one. This campaign, which aims to send a young boy to Panama, has raised more than $ 18,000 since September, surpassing its goal of $ 15,000.

"All ALS patients say they have reversed the damage done to them by ALS! Breathing is improving, speaking and swallowing are getting better, people in wheelchairs have been walking for two weeks, ”another said. This campaign has raised $ 1,040 from this patient's goal of $ 300,000 so far.

However, many experts claim that these claims are premature.

There is currently no evidence that stem cell therapy is effective for autism, according to Alicia Haladei, chief scientific officer at the Autism Science Foundation, Science Scientific reported last year. , Arnold Krigstein, professor of neurology at the University of California, San Francisco, also emphasizes that recent autism trials using stem cell transplantation have failed to confirm its effectiveness, despite claims to the contrary. He describes the research as "premature."

The use of stem cell therapy in ALS is particularly challenging. Even if the transplanted cells are able to migrate to the areas of damage, mature and integrate into the patient's nervous system before the disease takes its toll (life expectancy is variable but takes an average of two to five years from diagnosis) , they will encounter a hostile environment with motor neurons dying around them. Most studies are currently focused on the use of stem cells to create laboratory models of motor neurons on which drugs can be tested and the mechanisms of the disease investigated. The MND Association considers stem cell research to be essential for the understanding, prevention and treatment of MND, but states: "There is currently no reliable evidence to suggest that stem cells can be used as effective treatments."

A study by the American Medical Association found 43.6% of campaigns carrying definitive or reliable treatment efficacy data. It is not too difficult to trace these inflated claims back to some clinics that use "tokens of scientific legitimacy" – articles published in journals with little or no peer review in addition to implied links to preclinical research in reputable but unspoken research centers. [19659002] Sometimes the media have helped to spread the unfounded noise. In 2014, former soldier James Delittell, diagnosed with Parkinson's, paid 7,000 pounds for a stem cell procedure in Ukraine. Thereafter, the press often cites clinicians' claims of improvement in 75% of their patients. "After only one of the two treatments, the doctor asked me to touch my nose with my eyes closed and I was in a place – I couldn't believe it," DelLatle said at the time. "I feel like there is my Parkinson, that there is a spring that keeps pulling me to the left. But right after the treatment, the strength didn't feel as strong and my balance was much better as a result. "

Two years later, the deteriorating DeLittle told the BBC that he felt" annoyed, pocketed, and lied to. " However, most of these readers in 2014 will never understand that the person who hoped that stem cell therapy would be a "miracle in the making" eventually concluded that it was nothing more than a hoax.

Patients may not even receive what they are paid for (let alone previous effective treatments). Cornell University's regenerative medicine researcher Lisa Fortier tested nine products, but "none contain stem cells or any living cell of any kind." So, people are potentially funded by donors and donors who contribute to supposed stem cell treatments that do not have stem cells.

Not all stem cells are also created equal. Some studies use mesenchymal stem cells – these are cells found in the bone marrow, for example, that are important for the production and repair of skeletal tissues, such as cartilage, bone and fat cells. But these are already serious questions about whether they even function as stem cells. Even the person who baptized them for the first time, Arnold Kaplan, thinks they need to be renamed to quench their untapped potential: “I was wrong. I return the name I gave to these extremely important cells. "

Neither of them is to deny the potential for future (authentic) stem cell therapies to help with some neurological conditions. Parkinson's neurodegeneration is relatively focal – dopaminergic neurons are progressively lost in a specific region called the midbrain – making it a good potential candidate for cell replacement for some of its symptoms. A trial at Kyoto University uses pluripotent induced stem cells, developed by reprogramming the skin and other cells, to return to embryonic state. They become ready for conversion to other cell types, in this case dopamine precursor cells. "We made a hole in the left side of the head and transplanted about 2.4 million cells," the researchers said excitedly about their first patient at the start of their two-year trial. The UK's Parkinson remains optimistic about the potential of stem cell transplants, but stresses that research must continue within the UK's "strict ethical and regulatory framework".

A brighter increase in interest is centered around multiple sclerosis. Autologous hematopoietic stem cell transplantation (AHSCT) aims to replace or restart the body's immune system: high doses of chemotherapy obliterate the patient's existing immune system, which is then rebuilt using own stem cells harvested prior to chemotherapy.

Multiple sclerosis AHSCT is available in some private clinics in the UK and in the NHS, although in a very small number of centers with limited eligibility. The treatment is aggressive, still largely experimental worldwide, and has an approximate mortality rate of 1 in 330.

Why, however, is stem cell therapy thus offered for multiple sclerosis (MS) in the absence of similar approaches for other neurological conditions?

"In MS, the condition has a clear immune basis, so it makes much more sense to do bone marrow transplants as a way to treat the disease," explains Roger Barker, a clinical neurologist at the University of Cambridge, "in neurodegenerative disorders." [such as Parkinson’s] there is no such evidence, so it makes no sense to do so. "And despite the reasonable promise to use stem cell transplants for multiple sclerosis, many patients remain disappointed with the results – as BBC Caroline says ro Wyatt announced in his quest to cure his own MS.

Some patients feel that they simply do not have time to wait for the culmination of good evidence from long-term clinical trials. Take this legal basis for fundraising from a patient with ALS, a condition in which half of the patients die within three years of their first symptoms:

"I am up to 32% of my breathing, I cannot speak and I lose control (sic) of my hands and feet. I have a breathing mask for 12-14 hours a day … PLEASE HELP! "

Can't a patient who is" up to 32% breathing "have the right to try anything that can save them, raise funds to do so, even if this treatment is being administered by an unregulated clinic? Concerned that this vulnerability is being exploited, citing potential risks, including the formation of tumors.

But he also believes legitimate stem cell research will be harmed. for times based on the belief that these cl initiates offer essentially the same therapies as centers that have slowly worked towards clinical trials through the right rational approaches, "says Barker.

Although regulators need to play a role in tandem with cross-border partnerships, there is growing consensus that crowdfunding platforms also they have to take responsibility. Treatment campaigns that are dangerous or lacking in evidence continue to raise millions of dollars.

Patient Protection

It is true that these platforms can empower patients to explore options, maintain hope, and cover insurance gaps while enabling families and friends to provide your support. But shouldn't they also ban bad actors and stop the spread of misinformation (campaigns are shared hundreds of thousands of times on social media)?

Не е задължително, предложението на GoFundMe да предложи на Gizmodo по-рано тази година: „Докато се надяваме да бъдете полезен ресурс за лично събиране на средства, ние вярваме, че не е нашето място да им кажем какво решение да вземат. “След призив за сайтове за краудфандинг за строг ветеринарен призив за рак за защита на пациентите от недоказани или опасни лечения (например„ озонова терапия “ и витаминни инфузии) GoFundMe забрани на потребителите да търсят дарения за лечение в определени клиники месец и сега съобщават, че активно оценяват страховете около определени кампании за стволови клетки.

„С появата на тези нови опасения около определени клиники за стволови клетки ние предприемаме обмислен подход към справяне с кампаниите за стволови клетки, като същевременно продължаваме да предоставяме сигурно и сигурно място за събиране на средства за техните нужди и каузи. Ние обръщаме се към експерти и медицински регулаторни органи в пространството, за да разберат най-новите регулаторни разработки и как тези разработки влияят на нашите клиенти. “, Заявяват те в изявление.

Когато са представени с подобни проблеми, JustGiving по-рано заяви:„ Ние не „Вярвам, че имаме експертния опит да вземем решение за това.“ В имейл до Би Би Си те твърдят, че гарантират, че всички страници за краудфандинг спазват законовите изисквания и твърдят, че „безопасността и благополучието на хората, използващи нашата платформа, независимо дали те набират средства или даряват за дадена кауза, винаги са наш приоритет. “

Tree of Hope, организация за краудфандинг във Великобритания и благотворителна организация за деца, изискват различен подход. Тяхната медицинска комисия взема съвети за кампании от фондацията за стволови клетки във Великобритания. "Семействата се обръщат към Дървото на надеждата, когато всички други възможности са изчерпани", казва Лий Валинс, заместник главен изпълнителен директор и ръководител на семейната подкрепа на благотворителната организация. „Ние работим с някои невероятни, макар и често отчаяни родители и гарантираме, че работим с опции с тях, с тяхното темпо.“ Но въпреки че те са подкрепили редица семейства за набиране на средства за трансплантации на стволови клетки, съществуват предпазни мерки.

„Ние лесно прекарваме време с родители, които ни се обаждат, търсейки съвет за този вид терапия и доста често отказваме заявление, ако родителите не желаят да обмислят признати клинични изпитвания или алтернативни възможности за лечение“, казва Валинс. „Докато не е една от по-големите организации за краудфандинг, ние със сигурност се стремим да бъдем една от най-етичните чрез нашите проверки и мерки през целия процес.“

Лов на надежда

Джей Шети в крайна сметка получи двучасова инфузия на стволови клетки през канюла в ръката му в университета Дюк. Какви бяха очакванията на Шилпа? „Знаех, че това не е лек, знаех, че няма да излезе от него ходене и бягане. Но си мислех, че поне Джей ще може да седи след шест месеца, за да бъда честен. За съжаление това не се е случило “, казва тя. „Не сме виждали драматични промени, но той не е толкова спастичен, той е по-наясно, за нас семейство, което смятаме за доста голямо. Това е нещо като основа за всички физиотерапии. "

Но дали тази терапия е била отговорна за това подобрение? Може би Джей би придобил повече умения, тъй като така или иначе израства? „Трудно е да определим, тъй като отдавна провеждаме терапия, казва Шилпа.

Към днешна дата изследванията на стволови клетки на церебрална парализа в Университетския медицински център Дюк, ръководени от Джоана Курцберг, не са се оправдали с очакванията въпреки че работата продължава. През 2017 г. 63 деца с церебрална парализа бяха рандомизирани на лечение (еднократно вливане на кръв от пъпна връв) или плац бо. Разочароващо, изследователите не откриха промяна в основната крайна точка на изпитването: двигателна функция една година след началната инфузия. Те отчитат по-добри резултати при по-високи дози (подчертани в някои медии), но Пол Knoefler от Медицинското училище на UC Дейвис не е убеден. „Въз основа на малкия размер на изследването, висока степен на променливост в пробите в същите групи, промени в плацебо групата от очакваното и скромния характер на възможните разлики с по-високата доза спрямо плацебо, не съм убеден, че отчетеният ефект е смис ен “, казва той. Освен това той ми казва, че заедно с проучване от групата на Дюк върху аутизма, тези резултати „не„ предполагат силен положителен ефект на клетките от пъпната връв за педиатрични неврологични състояния “.

Cells4Life, банка от стволови клетки от пъпна кръв, която подкрепиха набирането на средства от Джей, все още заявяват на уебсайта си, че „изпитванията при Дюк са показали, че кръв от кръв от мозък може да обърне симптомите на церебрална парализа“. (Cells4Life заявява, че мисията им е да „съхраняват кръвта на кръвта на всяко бебе“. Ценообразуването им варира между 1495 и 2090 британски лири с допълнителна годишна такса за съхранение.)

Шетите остават непроменени. „Ако намерим мач и ако Дюк отвори подобен процес, аз съм повече от щастлив да платя за него“, казва Шилпа. „Ако имаме пари, просто ще продължим да го правим отново и отново, за да бъдем честни. В случая на Джей има много празни пространства в мозъка му и той се нуждае от нови клетки. ”

Междувременно тя и други родители ще продължат да търсят интернет късно през нощта, търсейки всичко, което може да помогне на децата им, търсейки надежда , призовавайки за лечение. Докато го правят, клиниките за стволови клетки ще обещаят да отговорят на техния призив.

Жул Монтег е писател и невролог в Лондон. Първата й книга „Изгубени и намерени“ изследва какво остава от човека, когато частиците от ума им изчезнат – от деменция и мозъчно нараняване до разстройства на съня и множествено разстройство на личността. Втората й книга „Лечението за диагностика“ ще бъде публикувана следващата година и изследва как медицинската диагноза е дълбоко опечена от силите на търговията, империализма и сексуалната дискриминация.

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