Lindsay Gellman | Longreads | March 2018 | 23 minutes (5,754 words)
Soon after Kate Colgan’s mother, Janet, awoke from surgery in a hospital near Manchester, U.K., last summer, she made a simple request of her daughter: “Get me to Germany.”
So Kate, then 25, fitted the family sedan with a roof rack and piled it with luggage. She arranged for her mother’s voluntary discharge from the hospital, against doctors’ wishes, and eased her from a wheelchair into the car’s passenger seat. Kate’s then-fiancé Chad drove them, along with the couple’s infant daughter, some 16 hours straight to a private treatment clinic on the outskirts of Dornstetten, a quiet medieval town in southern Germany.
Janet was diagnosed with metastatic stomach cancer in September 2016, when she was 54 years old. British doctors with the National Health Service gave her up to a year to live and offered only palliative care with chemotherapy.
Choosing palliative care felt to Kate like giving up. She scoured the web for other options for her mother, and came across the Hallwang Private Oncology Clinic, a for-profit institution that operates outside of the strictly regulated German hospital system. The Hallwang Clinic has emerged in recent years as the highest profile of a bevy of cancer clinics to gain traction in Germany. It markets itself as a luxury spa of sorts, touting its individualized treatments, pastoral setting in southern Germany’s Black Forest, and delicately plated dining-room meals.
The clinic’s online testimonials looked promising, so the Colgans inquired about treatment. After reviewing Janet’s medical records, a Hallwang Clinic doctor told the Colgans a cocktail of experimental drugs not widely available elsewhere could mean eventual remission for Janet. But the price would be staggering — more than $120,000. The clinic does not accept insurance and typically requires an 80% deposit before treatment can begin.
A chance at remission seemed worth a try — at any cost.
So in February 2017, Kate accompanied her mother to the Hallwang Clinic, where Janet stayed for several weeks and received treatments including immunotherapy vaccines, which are designed to help the body use its own defenses to fight specific cancer cells. Kate said she was given little information about these treatments and knew only that the staff called them “cancer vaccines.” The initial invoice totaled about $127,000. To cover it, Kate cashed out some of her home equity, liquidated both her parents’ pensions, took out a bank loan, and solicited donations on GoFundMe.
According to Kate, after leaving the clinic in the early spring, Janet felt better at first, and was able to go about her daily life. But she soon developed infections and a partial bowel blockage that required surgery. Doctors at a local British hospital, Blackpool Victoria, agreed to operate on her, but were skeptical that she could make a full recovery. Their assessment distressed Janet, who insisted on a return trip to the Hallwang Clinic — where doctors had a more optimistic prognosis — once the surgery was complete.
On a hazy Thursday afternoon last June, I met Kate on a wooden bench outside the Hallwang Clinic. A hillside lush with tall grass and low shrubs sloped beneath us, while behind us rose the clinic, a cream-and-brown complex buttressed by rounded atria. Janet lay in a patient bed inside, steps away.
“I’m going to have to get a lot more money,” Kate told me, shaking her head.
She had recently posted a fresh online appeal for donations for her mother’s treatment, which included a tearful Facebook video. The vaccines had started to work, she tells potential supporters in the video, “but we’re going to run out of money soon. Without you, she’s not going to make it.”
It’s little wonder that the clip garnered more than 91,000 views on Facebook. In person, as online, Kate is warm and articulate, with cropped platinum-blonde hair that she wore pulled back to reveal a quadruple-pierced right ear. She gesticulates often, once pausing to pluck a small spider from my hair.
Kate grew up in the small town of Lytham St. Annes, northwest of Manchester. She is a biochemist by training, and was working in medical sales when we met. She told me she had a particularly close relationship with her mother, whom she called her soul mate.
Kate insisted she wasn’t naive. She said she was aware not only of the long odds of her mother’s recovery, but also of her own susceptibility to anyone offering hope.
“I am a desperate, desperate woman,” she said. When a family member has cancer, she went on, “You’re an easy target — you’re prey.”
Nevertheless, Kate told me she hoped to fund her mother’s continued treatment at the Hallwang Clinic “until she dies.” She drew a distinction between this plan and pursuing the palliative chemotherapy covered by the NHS, citing the Hallwang Clinic’s assessment that its immunotherapy vaccines might lead to Janet’s remission.
“They do perform miracles on people,” she said.
Since its inception in 2009 as Privatklinik Dr. Ursula Jacob, the Hallwang Clinic has treated more than 7,000 patients. It recently generated fresh buzz in the British tabloid press when Leah Bracknell, a British television actress, announced she was soliciting online donations for stage-four lung cancer treatment there. The clinic’s website — available in English, French, Spanish, and Arabic, as well as German — offers few specifics and provides no names of physicians or information on pricing. Patients told me they are explicitly discouraged from speaking with media. Yet a handful of patient testimonials grace the clinic’s website and carefully curated social media accounts.
In desperation, patients have sold homes, drained savings accounts, and launched crowdfunding campaigns, sometimes spending their last days and dollars with the clinic.
This air of secrecy has become a hallmark of the Hallwang Clinic, which in recent years has found a niche in selling hope to the seriously ill at astronomical prices. Patients, many of whom have been told by other physicians that they are too ill to benefit from further treatments, are drawn in by the prospect of a long-odds last resort: a menu of treatments not always supported by scientific evidence and hard to come by elsewhere. These range from so-called “alternative” therapies, like intravenous vitamin infusions, to the use of unapproved or experimental drugs.
Sometimes the drugs the Hallwang Clinic offers can help extend a patient’s life. But based on conversations I had with more than two dozen current and former Hallwang Clinic patients, their family members, and former employees, as well as on medical and financial documents those patients and families shared with me, the Hallwang Clinic routinely couples unproven treatments with business practices that exploit the seriously ill. Patients and family members told me the clinic’s physicians sometimes pepper initial consultations with words like “remission” and pitch the drugs as potential cures. Treatment bills often reach six figures. In desperation, patients have sold homes, drained savings accounts, and launched crowdfunding campaigns, sometimes spending their last days and dollars with the clinic. Many die within months, often leaving behind families in dire financial straits.
When I contacted the Hallwang Clinic recently, its management declined to answer my specific questions. In an email reply, a Hallwang Clinic representative countered the bulk of my reporting.
“International scientists have acknowledged and confirmed exceptional treatment responses among our patients,” the representative wrote. “Needless to say, we are against any publication that spreads negative and derogative information about our specialized oncology clinic.”
The Hallwang Clinic is part of a larger, loosely regulated ecosystem of private medical centers that Germany allows to thrive. The country’s deep-seated affection for unconventional treatments has lately provided cover for businesses selling experimental drugs to patients under the mantle of alternative-treatment methods like homeopathy. Some, including the Hallwang Clinic, cater primarily to foreigners, who have increasingly been traveling to Germany for health care. Private clinics aren’t beholden to government record-keeping in Germany, where health care is largely decentralized. But the German National Tourist Board says that in 2016 some 259,000 Europeans alone came to Germany for health-related overnight stays, up from 157,000 in 2009.
Immunotherapy is a catchall term for treatments that trigger the body’s immune system to recognize and destroy cancer cells. It has emerged as a viable avenue for cancer-drug development, and researchers and patients worldwide are optimistic about expanding treatment options. Particularly promising is a class of drugs known as immune checkpoint inhibitors. These drugs aim to prevent cancer cells from deactivating T cells, one of the immune system’s key defenses. They have performed well in recent clinical trials against certain cancers, including melanoma and bladder cancer. Some, including the lung-cancer drugs Keytruda and Opdivo, have already been approved by the U.S. Food and Drug Administration.
Another model involves the use of different types of vaccines to help the immune system recognize and build up defenses against cancer cells. Synthetic peptide-based vaccines, made from specific protein fragments, can be designed for a certain type of cancer, but not for individual patients. They guide the immune system to destroy cancer cells that display a particular antigen. Individualized vaccines, by contrast, are made from a patient’s own cells. They are tailored to the mutations found in a particular tumor, and are designed to coax cancer cells to flag themselves for destruction by the immune system. While some peptide and individualized vaccines have shown potential in small-scale experimental trials, they largely have not been approved for clinical use in the United States or Europe.
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Peptide-based and individualized vaccines are widely available, however, at some private treatment centers in Germany, including the Hallwang Clinic. Under German law, operations like the Hallwang Clinic that function independently of Germany’s health-insurance system, employ licensed practitioners, and require patients to sign a waiver have a broad mandate to run private practices as they see fit. This arrangement — an anomaly in Western health care — has made Germany fertile ground for independent enterprises that make unproven cancer drugs available to seriously ill patients, many of whom hail from overseas.
The Hallwang Clinic draws many British nationals, some of whom are frustrated by their overwhelmed public health care system, the NHS. British tabloids like the Daily Mail and the Daily Mirror, among others, have breathlessly reported on the efforts of terminally ill British patients like Janet Colgan to raise funds for experimental treatment at German clinics.
“Back from the dead for New Year,” read a January 1, 2016, front-page headline in the Daily Mirror, accompanied by a smiling snapshot of cancer patient Claire Cunningham. The text continued, “NHS told me to go home and die but I crowdfunded treatment in Germany.”
This sort of narrative has become a pattern. When I searched recently on GoFundMe, I found roughly 100 active fundraising campaigns for patients, many of them British, seeking cancer care at the Hallwang Clinic, with some targets topping $490,000.
In many of the cases I was able to verify, gains appear to have been short-lived.
I reached Claire Cunningham by phone last June at the flooring business she owns in West Yorkshire, in northern England. Claire, who was 49 when we spoke, told me she was diagnosed in 2008 with breast cancer and had a right mastectomy in 2012. Her disease progressed, and British doctors told her in January 2016 that it had metastasized to her liver, lungs, and bones — and that she had six months left to live. In October 2016, she was hospitalized in England and began to suffer from seizures. In November 2016, friends brought Claire to the Hallwang Clinic in a wheelchair.
“Nobody thought I’d come back from Germany,” she said.
During her roughly six-week stay at the Hallwang Clinic, Claire said she received a mix of immunotherapy vaccines, vitamin treatments, dietary guidance, and physical therapy. She has since been able to return to work and was elated to learn that her tumors had shrunk dramatically.
“I am a miracle,” she told me.
Claire’s initial round of treatment cost more than $139,000, which she covered by tapping into her savings, mortgaging her home, selling her car, and launching a crowdfunding campaign. In fact, she told me that my call came as she and her staff were selling tickets to a Las Vegas–themed benefit, the proceeds of which would help fund her ongoing treatment.
In July 2017, the Hallwang Clinic shared a post featuring a photo of a cheerful Claire in an office setting, holding a floral bouquet wrapped in brown paper. According to the caption, Claire had been faced with a choice: “Hospice OR Hallwang!” It continues, “We are so glad, you chose the latter and Claire, you really look great!” The clinic’s website also features a testimonial from Claire and her photo.
In many of the cases I was able to verify, gains appear to have been short-lived.
Among the testimonials on the Hallwang Clinic’s public Facebook page is a post touting “the amazing results achieved” for British patient Pauline Gahan. The update, published in September 2016, includes a link to a Manchester Evening News article highlighting how Gahan, then age 60, had “almost beaten the disease, thanks to treatment in Germany.” The story is accompanied by a photo of Pauline, who is smiling and holding a sign that reads “I’m winning the fight against terminal cancer!!!” A testimonial from Pauline is also available on the Hallwang Clinic’s website.
Claire told me that this post featuring Pauline, whose circumstances she felt resembled hers, was a factor in her initial decision to contact the Hallwang Clinic.
Yet the testimonial ended up outliving its subject. Pauline died in April 2017. (Members of her family did not respond to requests for comment.)
The Hallwang Clinic’s website also features a lengthy first-person testimonial from British breast-cancer patient Kate Douglas, accompanied by a headshot. The clinic has also shared versions of Kate’s story on its Facebook page. The account details how, in September 2016, British doctors told Kate they had exhausted all options for treating her stage-three breast cancer, and that she should simply enjoy her remaining time with her young daughter.
Instead, the testimonial says, Kate sought treatment at the Hallwang Clinic.
“The medical team has since guided my treatment plan every step of the way and I have full confidence in them and as a result my tumor markers have dropped by over half,” the testimonial says. “I am fully reliant on fundraising through GoFundMe and so far I have been blessed.”
This testimonial, too, outlived its subject. Kate died last month, just days after her 40th birthday. Claire attended her memorial.
I asked Hallwang Clinic if its management had specific comments regarding Pauline’s and Kate’s testimonials and the continued use of these endorsements on its website. Part of the clinic’s reply alluded to these questions.
“Many of our patients are currently under a maintenance program for many years now,” the clinic’s statement said. The families of the two individuals about whom I’d asked, it continued, “are actually grateful for the Hallwang Clinic, which has helped both patients in a very difficult situation.”
While a smattering of alternative-treatment clinics exist elsewhere in Europe, as well as in Mexico and the United States, Germany’s long history of embracing unconventional treatment methods has helped these institutions to flourish. Homeopathy, for example, originated in 18th-century Germany and continues to enjoy widespread popularity there. The treatment method was developed by the German physician Dr. Samuel Hahnemann, who theorized in 1796 that a substance that caused a healthy person to experience symptoms of a given disease would mitigate the same symptoms in an ill person. He developed these remedies by diluting material from plants, animals, or other sources in alcohol or distilled water. His ideas have since been widely debunked by modern science.
Yet German insurers typically reimburse patients for homeopathic treatments, and German law extends robust protections to certified nonmedical practitioners, or heilpraktikers, whose training in alternative healing methods like homeopathy permits them to treat patients with non-infectious diseases, such as cancer. The designation traces its roots to a 1935 statute implemented by the Nazi government in an attempt to regulate a growing group of natural healers. The original edict precluded the training of new heilpraktikers, a move intended to phase them out and push medical doctors to incorporate alternative treatments into their practices. Instead, after the war, the ban on heilpraktiker training was overturned.
I spoke by phone with Eugen Brysch, CEO of the German patient-advocacy organization Deutsche Stiftung Patientenschutz. He explained that alternative treatments are now gaining popularity with licensed medical doctors, more of whom have begun to seek out such training as an add-on.
And increasingly, Brysch told me, experimental drugs are finding their way into alternative-treatment clinics, where they have been folded into an older menu of unproven cancer-treatment options, such as ozone therapy (in which the gas is pumped into the bloodstream) and whole-body hyperthermia (in which the patient’s body temperature is elevated to fever range for extended periods). In August 2016, three patients — two from the Netherlands and one from Belgium — died within days of one another at the Biological Cancer Center, a private clinic run by a heilpraktiker near Düsseldorf, in western Germany. They had been injected with the experimental cancer-treatment drug 3 Bromopyruvate, or 3-BP, according to a local prosecutor’s report. The incident briefly reignited debate over whether private clinics should be subject to stricter oversight.
The experimental-treatment pipeline from lab to private clinic in Germany has grown murky, and, in some cases, rife with loopholes and illegal practices.
Ultimately, though, Brysch told me, little action has been taken beyond barring the practitioner in question, Klaus Ross, from practicing locally and shuttering his establishment. (Last fall, a regional court overturned the ban on Ross.) According to Brysch, some German politicians are reluctant to alienate voters enamored of alternative treatments — not to mention the influential homeopathic lobby, which comprises practitioners as well as suppliers of natural compounds. Heilpraktikers have been growing in rank in Germany, amassing considerable political power. In 2011, the most recent year for which data is available, there were about 35,000 — up from 14,000 in 1998.
Against this backdrop, the experimental-treatment pipeline from lab to private clinic in Germany has grown murky, and, in some cases, rife with loopholes and illegal practices.
Throughout Europe, drugs and vaccines intended for use in humans — even at private clinics — must comply with production standards set by the European Medicines Agency (EMA) and meet the quality-control criteria outlined in the international Good Manufacturing Practice (GMP) code. This code governs aspects of production ranging from safety to marketing, packaging, and labeling. Compliance can be cumbersome and often drives up manufacturing prices.
To circumvent these hurdles, some physicians offering peptide-based immunotherapy vaccines have an implicit arrangement with laboratories to skirt regulatory controls designed to protect patients. I contacted the University of Tübingen in southern Germany, which has a well-known Department of Immunology, and spoke with the department’s lead researcher, Dr. Hans-Georg Rammensee.
Rammensee confirmed that the university’s lab sometimes produces peptide vaccines for physicians at local private clinics. I asked him whether the lab adhered to GMP standards when filling these orders. He sounded agitated by the question, and warned me that the issue was “a gray area.” Yet he was willing to explain that, in what he called an increasingly common practice in Germany, a physician might place an order with a lab for a particular peptide sequence, designating it “for laboratory use” only — rather than for patient use. Since a request for a compound that won’t be administered to a human patient does not require GMP compliance, a lab can fill it quickly and cheaply, he said. The strategy allows for deniability on the part of labs, who sell the peptides to the clinics at cost. Some labs are aware of clinics’ intentions to administer them to patients as vaccines.
A lab can produce 30 milligrams of a given peptide, or enough to yield about 100 vaccine doses, for roughly $570, Rammensee told me. Often, he said, private clinics go on to administer these laboratory-grade peptides to patients at inflated prices.
“We send them peptides for lab use,” Rammensee said of physicians at private clinics, though he declined to name those his lab has supplied. “They do with them what they want.”
I called Dr. Christoph Huber, a pioneer in custom immunotherapy vaccines, to see if he was familiar with this type of supply chain. Huber was once the director of the Department of Hematology and Oncology at the Mainz University Medical Center. He now serves as co-founder of German pharmaceutical firm BioNTech AG, which he said develops custom immunotherapy vaccines via a GMP-standard manufacturing process and does not sell to for-profit clinics. I relayed to him, in general terms, the process that Rammensee described. He became alarmed and told me that clinics that obtain and sell drugs this way are engaged in “illegal” and “shocking” activity.
I also described this practice in general terms to Klaus Cichutek, president of the Paul-Ehrlich-Institut, Germany’s regulatory authority on certain categories of medicinal products, including vaccines. He told me over the phone that Germany’s local law-enforcement bodies — not its federal institutions — were ultimately responsible for enforcing his organization’s guidelines, and that they ought to look carefully at the drug-procurement practices of private clinics in their midst.
“It is a crime to provide patients with drugs where we do not know the efficacy or safety,” he told me. He then asked me to turn over the names of my sources and other details so that he could launch an investigation right away. (I declined.)
Critics argue that laissez-faire pockets in German health care increasingly threaten to undermine the country’s prowess in medical research, a field in which it has positioned itself as a European leader. Germany’s decentralized, sometimes-uneven approach to oversight might eventually erode its authority in the broader, decades-old debate over what drugs should do.
Since the 1960s, regulators like the FDA and the EMA typically have mandated that medical treatments be proven both safe and effective. Patricia Zettler, an associate professor at Georgia State University College of Law and a former attorney at the FDA, explained to me that when it comes to seriously or terminally ill patients, the balance between safety and efficacy becomes more complicated to strike — and the measure of success more elusive.
Germany’s decentralized, sometimes-uneven approach to oversight might eventually erode its authority in the broader, decades-old debate over what drugs should do.
In those cases, Zettler said, regulatory bodies are often willing to authorize the use of drugs that might be less safe, or that have not been proven effective, on the basis of compassionate use. These requests pass through formal channels, and pharmaceutical companies must not charge patients more than the cost of the drug. When unproven treatments are exorbitantly priced, ethics-based arguments in favor of such arrangements collapse.
I also spoke by phone with Susanne Weg-Remers, director of the Cancer Information Service at the German Cancer Research Center in Heidelberg, which helps patients navigate evidence-based options for cancer treatment. She told me that stronger safeguards are needed to protect patients, especially when it comes to unproven treatments.
“Maybe some of these clinics are taking advantage” of the patients’ situation for profit, she suggested.
For the most part, though, these enterprises operate in Germany with little oversight. Private clinics that employ licensed medical doctors, rather than heilpraktikers alone, seem to be especially inoculated against censure.
The Hallwang Clinic website offers few concrete details on the prices of treatments or qualifications of its medical staff. Much of the clinic’s operations seem to mirror the very same opacity.
The clinic’s parent company, Hallwang Clinic GmbH, is owned and operated in part by drugmakers who appear to have a vested interest in the treatments it sells — an arrangement that has raised red flags for potential collaborators. The company’s CEO, Albert Schmierer, a pharmacist by training, personally holds a roughly one-quarter ownership stake in the Hallwang Clinic, according to 2016 shareholder documents available through Moneyhouse.de, a German corporate-records database. Schmierer is also listed online as CEO and owner of Dr. Zinsser Pharmaceuticals, a medical-products company, and runs Rappen-Apotheke, a pharmacy that specializes in homeopathy and is located near the clinic, according to its website.
In the course of my reporting, I spoke with several physicians and practitioners who head private cancer-treatment clinics throughout Germany. Among them was Dr. Joachim Drevs, an oncologist who runs the private clinic Unifontis in the central German town of Sickte. He told me that in 2013, Hallwang Clinic management approached him about forging a collaborative relationship. During their preliminary conversations, Hallwang Clinic executives shared with him their drug-sourcing procedures, including that Schmierer’s pharmaceutical firm produces a significant portion of the treatments offered at the Hallwang Clinic. Drevs said he was distressed to learn of this arrangement.
“If the decisions are made by pharmacists — the owners of the treatments — it’s impossible to stay neutral” in determining the best course of care for a given patient, Drevs told me. He said he ended discussions with the Hallwang Clinic after a few weeks.
At the Hallwang Clinic, Schmierer has presided over a revolving door of staff, former employees told me. The several former employees I spoke with in person and by phone asked that their names be withheld so as not to jeopardize their current jobs. Some said the clinic had them sign non-disclosure agreements, and they feared legal or other retaliation were they to speak on the record. They told me they left the Hallwang Clinic largely due to their concern over managerial tactics that included barring patients from vetoing elements of proposed treatment plans and, at times, revising costs upward before or after treatment began. One former employee said clinic management aggressively solicited payment from a freshly grieving spouse. Ex-employees also said the clinic was at times understaffed, including during a several-month period in 2014 when it had no full-time oncologist on staff.
The Hallwang Clinic did not provide specific responses to my questions about Schmierer or the clinic’s business and staffing practices.
In conversations with patients, family members, and former employees, I learned that the Hallwang Clinic is often willing to treat — and charge — patients that other institutions have deemed beyond help, and sometimes continues to administer expensive drugs even as a patient’s condition deteriorates. And the clinic has marked up the price of some experimental drugs by thousands of times what they cost to produce.
In August 2016, the Hallwang Clinic shared a pair of links on Facebook to clinical results (from 2006 and 2010, respectively) of a peptide-based breast-cancer vaccine. These came from trials led by researchers at the U.S. Military Cancer Institute at the Uniformed Services University of the Health Sciences, in Bethesda, Maryland. The vaccine, known as GP-2, works by targeting a particular protein marker called HER-2 expressed in some tumors, and tagging for destruction cancer cells that display the marker.
I called Dr. George Peoples, a professor of surgical oncology at the University of Texas MD Anderson Cancer Center and an author of the studies, to learn more about the trials’ practical significance. He told me the vaccine has not been approved in the United States or Europe. But he said the GP-2 vaccine is simple and inexpensive to produce, and estimated that 1,000 doses could be made to human-grade specifications for as little as $20 per dose. According to patient invoices shared with me, the Hallwang Clinic recently charged more than $10,800 for each of several doses of GP-2.
The Hallwang Clinic did not address my specific questions related to its administration of GP-2 or the vaccine’s cost.
Some patients and their family members also told me the Hallwang Clinic withheld details pertaining to immunotherapy vaccines it administered, including where and how they were produced.
The clinic has marked up the price of some experimental drugs by thousands of times what they cost to produce.
Miki Martinovic, who was born in Montenegro and was living in Toronto when we spoke, told me over the phone that he spent several months at the clinic over the past two years while his wife, Svjetlana, was being treated there for stage-four glioblastoma. Last summer, as Svjetlana’s condition worsened and treatment costs piled up, Miki grew suspicious of the clinic’s reluctance to provide details about the peptide vaccines she was receiving. He told me he asked one of the clinic’s physicians for documentation validating the provenance of the drugs.
Miki said he persisted until a clinic administrator showed him a sheet of paper, covering the top half with her hands but leaving visible a portion of the document that read “99% purity.”
Miki was livid at the clinic’s repeated evasions. “They are crooks,” he said.
He told me he made his frustration known, and began to confront staff within earshot of other patients. When an administrator presented him with a new invoice, he crumpled the sheet and hurled it in her direction. When Schmierer visited on the morning of July 30, 2017, Miki jeered at him, calling him “mafia boss.” Shortly thereafter, Miki received a memo from Schmierer on Hallwang Clinic letterhead requesting he leave the premises by 3 p.m.
“Unfortunately we have to pronounce a house ban for you,” it said.
His behavior was disruptive, the note continued, and other patients had reported he’d violated the clinic’s rules by offering patients cannabis oil and sedatives. (He had.) The clinic would, however, continue to treat Svjetlana if he wished.
Miki left in search of a new treatment facility. He found a private clinic several hours north, near Frankfurt, that was willing to accept Svjetlana. She died there within days of relocating.
The Hallwang Clinic treatment bill for Svjetlana topped $1.5 million. Miki shared with me dozens of pages of Hallwang Clinic invoices corroborating this figure, which he told me he paid in full by selling real estate he owned in Toronto.
The Hallwang Clinic did not address my specific questions about the provenance and production of its immunotherapy vaccines.
A few weeks after I met Kate Colgan in June, she and her fiancé decided to plan an impromptu wedding while Janet was well enough to attend. The couple married in Lytham St. Annes in August. In lieu of gifts, they asked for donations to fund Janet’s ongoing treatment. In photos Kate shared online, she wears a lace-embellished bridal gown and carries a bouquet of peach roses. She embraces Janet, who stands beside her in a cream-colored jacket and a hairpiece with flowers that match Kate’s.
Soon after, Janet’s health again began to decline, and she was no longer able to travel to Germany. She sought care at a British hospice, where she died in October.
As I tried to learn more about Janet’s final months, I contacted a few individuals Kate mentioned in social media posts about the toll of cancer on families.
One was Lynn Wealleans, 49, of Liverpool, who agreed to speak with me by phone about her family’s own experience at the Hallwang Clinic. Lynn told me that her husband, Mark, was diagnosed in September 2016 with late-stage cancer of the peritoneum, or abdominal lining. He was 48 at the time, and ran a rubber-manufacturing business. British doctors told him he had between three and six months to live, and that further treatment would be ineffective.
As she researched options, Lynn came across a newspaper article on the actress Leah Bracknell’s efforts to fundraise for immunotherapy treatment at the Hallwang Clinic. Lynn’s sister contacted the clinic, where staff encouraged the family to send a tissue sample for initial evaluation. They did. After the clinic processed Mark’s sample — which cost about $49,000 — Lynn and Mark traveled to the Hallwang Clinic, arriving on November 14, 2016.
They met with a staff physician, who told the couple that he could custom-engineer a treatment for Mark and proposed creating individualized vaccines. Several rounds would be required, each costing tens of thousands of dollars. The physician did not provide information on where the vaccines would be produced, Lynn told me.
The couple stayed at the clinic for about three weeks while Mark received treatment, then returned home to England. Mark came back to Hallwang alone in mid-December. On December 14, clinic staff informed him that his tumor markers had halved — a sign of considerable improvement. When the clinic closed for about two weeks over the holidays, Mark went back home. Lynn said she noticed he was growing weaker and turning yellow with jaundice.
In January 2017, Mark had tests done at a British hospital which showed his tumor markers had risen since his diagnosis in the fall. The couple returned to the Hallwang Clinic that month for a short stay. According to Lynn, the physician was eager to continue treating Mark with vaccines despite his failing health. By the end of January, Mark was admitted to a Liverpool hospice, where he died a few days later.
To me, they were just still making money” until Mark died, Lynn told me. “They kept saying, ‘We’ll try this peptide, we’ll try this.’
Mark’s course of treatment at the Hallwang Clinic cost around $294,000. He had critical-illness insurance that paid out a cash disbursement directly to him, which covered the treatment costs. Lynn’s sister also created a crowdfunding page to help with other expenses.
“To me, they were just still making money” until Mark died, Lynn told me. “They kept saying, ‘We’ll try this peptide, we’ll try this.’”
Even putting aside the clinic’s high costs, she told me, it was clear to her — now, more than a year later — that its long-term track record was poor, though some of its treatments helped to extend the lives of patients beyond the prognoses they were given elsewhere.
“Most of the people I met when I was at the clinic have passed,” she told me. While the clinic’s treatments were of little help to Mark, she said, they “bought other families time.”
Claire Cunningham, the West Yorkshire patient who felt she was improving last summer, now believes her time is running out. In a phone call earlier this month, she said that, despite having had subsequent treatment at the Hallwang Clinic and spending a total of more than $368,000 there over a several-month span, her cancer has lately returned to her lungs, and she now has at least 10 new tumors in her spine, which limit her mobility.
“I’m in a bad way,” she said.
Meanwhile, she added, more than a dozen fellow Hallwang Clinic patients have died since she began treatment there. And, while a few months ago she participated in the clinic’s promotional efforts — and her testimonial remains on its website — she’s now adamant that she would not return there, even if she could afford it.
“I’ve spent every penny I’ve owned — I don’t have a pot to piss in,” she said. “I’ve been dying for 11 years.”
Lindsay Gellman is a reporter based in New York. Her work has been published in The New York Times, The Wall Street Journal, The New Yorker, The Atlantic, and elsewhere. She was a recipient of a Fulbright reporting fellowship to Germany in 2016-17.