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The Big Data Minefield as AI Shapes the Future of Health Care




By Angela Dong

As Artificial Intelligence technologies expand at an unprecedented rate, charting the unexplored frontiers of health-care AI has never been more urgent. In this three-part series, we explore the nascent legal landscape of health-care AI, appraise the value of patient data and question the appropriate use of AI. Read the first article, Legally Blind, here

Why pearl-clutch over artificial intelligence (AI) in health care when we greeted the Internet with open arms, gleefully eschewing paper charting for dictation?

Patient advocate Ron Beleno knows the answer: “Data is your story based on moments in time.”

Just as every step you take sends a data point into a smartwatch’s fitness tracker, every clinical encounter generates phonebooks full of information. These datasets form the building blocks in training AI algorithms. The more complex the AI model, the more data is needed – to be devoured, processed and generated again.

The lives of countless patients and billions of dollars lie at stake. We are entering the age of Big Data, where every byte is worth its weight in gold.

“The majority [of patients] don’t know the value of their data,” Beleno states. In his 10 years advocating for patient rights in the health-care technology sector while juggling Alzheimer’s caregiving duties for his father, he sees health-care AI as a net benefit for patients and their families … with some caveats. “The minority who do [see issues] are usually concerned about privacy.”

Mohamad Alarakhia, Chief Executive Officer of the Centre of eHealth Excellence and practising family physician, says: “We have the regular framework in the legislature about patient privacy … the challenge is with AI, it is a new frontier in terms of what can be done with the data, and how these systems learn from the data.”

Currently, many AI models retrospectively scrape large datasets from existing databases, with and without permission, to varying consequences. Recently, the New York Times sued OpenAI and its backer, Microsoft, for allegedly training its large language model (LLM) ChatGPT on millions of copyrighted articles without permission. In health care, even the Mayo Clinic has struck licensing deals with 16 AI companies for access to de-identified patient data without notification or consent. Others, like Memorial Sloan Kettering Cancer Centre came under fire for conflict of interest after it granted 25 million patient pathology slides to Paige.AI even though board members of the cancer centre held equity stakes in the AI company.

In Canada, the failed Consumer Privacy Protection Act (Bill C-11) unceremoniously died in Parliament, thus leaving no federal privacy protections for de-identified data. Such data is thus no longer considered personal information, rendering it unprotected from privacy and protection provisions such as the Freedom of Information and Protection of Privacy Act. As a result, big data transactions in the healthcare sphere remain unreined, with datasets free to be brokered commercially without need for patient consent.

However, advances in AI calls for a re-examination of the increasingly blurry boundaries between personal health information and anonymized aggregated data.

The most obvious risk is a data leak in the event of a cybersecurity incident. The more insidious risk that only grows as AI engines become more powerful is the increasing possibility of re-identifying individual patients from previously de-identified aggregate data. Data triangulation has been proven in multiple studies to successfully re-identify individuals, with one 2018 study using machine learning algorithms to re-identify up to 85 per cent of participants out of a pool of 14,451 people.

Although technically illegal to re-identify this data, the potential of this technological advance calls into question the boundaries between personal health information and de-identified aggregate data. Consent now becomes the last line of defence against potentially disastrous consequences of uncontrolled re-identified data distribution. In the U.S., insurance companies Humana, Cigna and UnitedHealthcare already are facing class-action lawsuits regarding their use of AI to prematurely deny claims. Without regulatory protections, we may see deleterious consequences such as insurance premiums based on medical history, workplace discrimination and even predictive behavioural analytics with applied potential in everything from marketing to forensics.

“It takes one bad story to easily turn people away,” Beleno warns.

Despite these risks, courts appear to be in favour of AI companies over user protections – at least for now. A court in the United Kingdom threw out a lawsuit against Google’s DeepMind, brought about for alleged patient data misuse and inadequate privacy protections for 1.6 million patients whose medical records were transferred without permission by the UK National Health Service (NHS). A similar lawsuit brought against the University of Chicago Medical Centre and Google was thrown out by a federal judge. The theme behind these tossed cases centres on the failure to adequately demonstrate tangible evidence of harm caused by data sharing, a difficult feat in such a nascent field.

For now, in the absence of clear legal protections and precedents, physicians are exploring grassroots workarounds.

In the absence of clear legal protections and precedents, physicians are exploring grassroots workarounds.

Alarakhia implements pilot programs for Ontario physicians to trial and review AI scribe programs. He notes that while there is a diversity of AI vendor approaches to data privacy, the most cautious vendors favoured by some physicians currently do not collect patient interaction data for training purposes, treating the data generated from each specific clinical encounter as a dead end. Although this practice can circumvent the thorny questions around data privacy for now, AI vendors with dead end data limitations will inevitably lose out in the data-hungry AI arms race.

Another physician, Jaron Chong, is speaking up as a subject matter expert for various national AI advisory groups. One solution he proposes adapting to AI is the tissue donation model for consent, where consent is pre-emptively and explicitly obtained for specific uses, with possible commercial applications to be disclosed beforehand. Whether this modest proposal catches on, time will tell.

However, even if we optimize and map out the regulations around health data collection, how do we ensure data contributions will be fairly compensated and used for patient benefit?

Outside of health care, archival footage has never been auctioned for higher prices. OpenAI recently reached a deal with the Associated Press for access to decades of press archives to train its large language models (LLMs), while Apple paid between $25 million-$50 million to Shutterstock to access its visual treasure trove. Reddit is projected to make more than $203 million from Google for its sale of more than 17 billion user posts/comments for AI training, drawing controversy from American regulators over whether it has a right to commercially license user-generated content without giving the creators a cut.

Cybersecurity incidents provide additional insights on the value of health-care data. Between 2022-2023, American health-care data breaches led as the costliest of data breaches at an average of USD $10.93 million lost per breach. This value was dwarfed last November when a $480 million class-action lawsuit was launched against a group of southwestern Ontario hospitals after 270,000 patients had their data sold by hackers on the dark web, with legal proceedings currently underway.

Another, less catastrophic approach to quantifying data value is the benefit generated from its applications to the economy in terms of saved health-care costs. For Canada, the economic benefit is unquestionable; McKinsey & Co. estimated a net savings opportunity of $14 billion-$26 billion per year with broad applications of AI at scale in the health-care sector.

Regardless of valuation approaches, this gold rush raises the awkward question: Who owns health data?

“Data belongs to patients,” opines Rosemarie Lall, family physician and early adopter to AI scribe technology in Ontario. Given the countless hours of (often unpaid and on overtime) administrative labour put in by physicians to make progress notes later used to train LLMs, and the fact that patient data often is collected literally from blood, sweat and tears, one wonders about the price owed for our digital pound of flesh.

Instinctually, one might jump to the solution of paying people for their health data, in a model similar to royalties, whenever their data is used. However, several ethical considerations arise. Socioeconomically disadvantaged groups would be disproportionately targeted by companies, trading personal privacy for discounts or benefits. With individual – often monetary – incentives, selection bias and behavioural modification to fit desirable datasets’ eligibility criteria may occur, confounding data accuracy. A society-wide expectation of payment for data also disproportionately advantages wealthier commercial organizations while making innovation inaccessible for those with tighter purse-strings – such as smaller startups, academic institutions and public hospitals – whose research ironically may actually align more with the public good.

Instead of individual payments, collective restitution may prove more equitable in redistributing the value created from public data. Quid pro quo solutions such as “free data for free service,” or adjusting corporate taxation based on the quantity of patient data collected and the social good of the AI application can incentivize socially responsible practices.

In this jungle of data giants, unfinished regulations, legal minefields, and bleeding-edge algorithms, the path forward demands a concerted effort from physicians to take ownership of their unique role bridging patients and the health-care system.

“Physicians should be the guardians of patient information, not large corporations or third-party companies that will profit from our patient’s data,” Lall states firmly. Such guardianship comes in many forms. Most visibly, lobbying and advocacy by physician groups is essential to ensure health-care ethics, patient protections and alignment with patient care.

Furthermore, physicians play a key role in collecting the health data feeding the algorithms. “The key bottleneck [in scaling AI models] is the information you provide,” Chong says. “Whoever has access to the data is who will be powerful.”

This may entail carving out new roles in the health-care ecosystem, such as patient data advocates, akin to current Power of Attorney models, and further exploring the nuances of data ownership.

Not only is access something that physicians are at a critical juncture to influence, but quality control from a professionally trained eye is not to be underestimated. There is a common saying in computer science: “Garbage in, garbage out,” meaning that poor quality data inputs will yield poor quality faulty outputs. Currently, there is considerable heterogeneity in the skill levels of data annotators employed by various AI vendors, ranging from hires with graduate degrees, to less-educated, outsourced hires from lower income countries specifically trained in a narrow subset of data screening. For high-impact, high-risk industries like health care, high-quality outputs are critical, and physicians play an integral role in auditing errors and applying clinical and research expertise to ensure internally and externally valid data inputs.

Ongoing clinical feedback from everyday use of AI models forms the basis for AI’s self-learning and continuous improvement. Physicians will have to realize the agency – and the responsibility – they hold in interacting with this feedback loop.

“If something goes wrong, call it out. If something goes right, publicize its success.” Chong says. Such actions ensure algorithms move in a direction aligned with physician needs, patient goals and evidence-based medicine.

Data is the lifeblood of all AI. As a result, Chong urges physicians to realize their agency: “To leave your voice out of the equation is a major disservice to the ecosystem.”

As the stewards of patient data in this brave new world, physicians’ choices now – whether intentional or not – will shape the future of health care, one byte at a time.

Previously Published on with Creative Commons License


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Sunscreen Dispensers Make Skin Cancer Prevention Easier




By John Masson

Sometimes it’s better not to overcomplicate things.

So when students at the University of Michigan Medical School wondered what prevents young people from using sunscreen more often, they simply asked them.

And what they found?

Young people were well aware of the importance of sunscreen and the cancer risk that comes with repeated sunburns – the problem was, though, that sunscreen just wasn’t handy when it was needed.

To the med students, this seemed like an eminently solvable problem.

Their one study led to two developments: first, a successful JAMA Network journal publication for the med school students who conducted it.

Then, perhaps even more significantly, the creation of a program that now places sunscreen dispensers in places around Washtenaw County where young people are likely to need them the most.

“This all started based on findings from the research project we did, where we polled youth ages 14 to 24 throughout the country on their views toward sunscreen and sunburn,” said Olivia Lamberg, M.D., who graduated from the med school this spring.

“We found the main barrier to sunscreen use was access, not education or awareness. So we decided to meet them where they’re at by putting dispensers in places where they may be needed.”

The plan

Beginning in summer 2022, with a $10,000 grant from the Rogel Cancer Center, Lamberg and her fellow med students partnered with Ann Arbor Parks and Recreation, Michigan Athletics, and dispenser and sunscreen supplier Impact Melanoma to strategically place dispensers in places like pools, golf courses and outdoor athletic fields.

In the first two years, 17 dispensers were deployed across 13 locations in Ann Arbor.

About 10,000 applications of sunscreen from the dispensers were made, and an estimated 50,000 people have seen the dispensers and their sun safety messaging.

Starting this summer, the program is expanding to high schools in Ann Arbor and Ypsilanti.

“Certainly, when teens leave the house they are not first and foremost thinking of skin cancer prevention. Athletes are packing athletic gear, not sunscreen,” said Svati Pazhyanur, a medical student who will oversee the program in the coming year since Lamberg graduated.

“One advantage of this project is building a habit and building awareness. In that way, I think it’s been really beneficial.”

Tammy Chang, M.D., associate professor of family medicine at Michigan Medicine, has been involved with the students’ efforts from the beginning.

“This is such a wonderful example of how students are participating in research that can improve the health of their own communities,” Chang said.

“It turns out, young people actually have a lot of knowledge about the dangers of sun exposure. The problem really was operationalizing that knowledge.”

Chang adds that one of the keys to long term skin health is early and consistent use of sunscreen, and that doing so can pay huge dividends for years to come.

“Young people have this potential to change their behavior in ways that can benefit them for the remainder of their lives,” Chang said.

“The potential to impact health and improve the lives of young people is enormous.”

That realization helped drive the medical students’ participation in the program, which includes educational visits to Ann Arbor Parks and Recreation’s summer camps.

During the visits, medical students taught more than 250 youngsters about sun safety, using a combination of games to bring the lessons home.

“We’d do a lot of different games – relay races, have teams pick through different types of clothing to see which types are best in the sun, or have them dress up a teammate in sun safety clothing,” Lamberg said. “We have beads that change color in UV light, so we made bracelets and necklaces out of those,” said Lamberg, who stated it visually highlights the difference between playing in the shade and playing in the sun.

For Pazhyanur, who now dedicates an estimated three to five hours a week to the project, the efforts are well worth it.

“We’re building a habit and building awareness, and in that way I think it’s been beneficial,” Pazhyanur said.

Because of Pazhyanur’s Indian heritage, the work has extra meaning for her: people of color, although typically less prone to skin cancer, tend to have worse outcomes because darker skin means melanoma is often detected later.

“The prevalence is lower than in people with lighter skin,” Pazhyanur said.

“But skin cancer is often caught later, and there’s a higher melanoma mortality among people of color.”

Chang says the heart of the program – and its greatest strength – is its roots in the community.

“The strongest aspect of this program is that it’s community driven,” Chang said.

“The idea came from young people who live and work in this community, and that’s why it works. Communities know best what is good for them.”

It doesn’t hurt, either, that it’s really pretty simple, she says.

“It’s not a fancy, complicated program,” Chang said.

“But sometimes the most simple programs, focused on what the community really wants, are the most effective.”

Previously Published on with Creative Commons License


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Sea Moss Supplement by Holistic Vybez: A Family-Owned Wellness Revolution



Established by Naeem and Ashley Akbar, Holistic Vybez is a family-run firm that has grown quickly to become a major force in the holistic health sector. Holistic Vybez, which was founded on vegan principles and was influenced by Dr. Sebi, was started during the pandemic to cater to the growing interest of consumers in wellness and health. This piece examines their path, the difficulties they encountered, and their goals going forward.

Both Dr. Sebi’s disciples Naeem and Ashley Akbar were devoted vegans. They founded Holistic Vybez during the pandemic because of their steadfast commitment to natural health and wellness. They decided to go all in and sell goods meant to improve immunity and general well-being, such as their well-liked sea moss supplement, after realizing that consumer attention was shifting toward health.

Sea Moss Gel Challenges: Perseverance Amidst Adversity

Starting a sea moss gel and health company during the pandemic’s peak meant overcoming several challenges:

  • Pandemic challenges: Products were lost and reshipping costs incurred a loss of almost $7,000.
  • Customer communication: To establish their superior level of customer service, Naeem and Ashley personally contacted each consumer to explain the circumstances.

Seamoss Store: Scaling Up

Holistic Vybez showed tenacity and dedication by expanding from a basement operation to a 5,000-square-foot warehouse in just two years. Their commitment to delivering a high-quality sea moss supplement and upholding stellar client relations drove their quick development.

Health With Intention

  • Emphasis on health benefits: Holistic Vybez places a higher priority on health benefits than flavor. Every newly released sea moss supplement producthas an ever-expanding list of therapeutic benefits.
  • Novel goods: To provide extra value for their customers, every new flavor or product, like their sea moss gel, is carefully chosen for its health advantages.

Career Highlights

  • Rapid growth: In just four years, Holistic Vybez has scaled to an $8,000,000 business.
  • Customer loyalty: Their commitment to quality and customer service has earned them a loyal customer base.

Expanding Sea Moss Gel and the Holistic Vybez Brand

Holistic Vybez aims to become a leading brand in the holistic health industry. The Akbar’s dream of opening physical stores to reach and support more communities, making it easier for customers to buy sea moss online or visit a nearby seamoss store.

The Heart of Holistic Vybez and Sea Moss Supplements

A tribute to the Akbars’ commitment to infusing family values into every facet of their business is Holistic Vybez. Because they are a family-run, black business, they make sure that all of their employees are treated as members of their extended family, which fosters a friendly and cooperative work atmosphere.

Image sourced from the Holistic Vybez website.

Naeem and Ashley Akbar have made it a point to conduct their business in an environmentally responsible manner. They use food from sustainable farms and utilize recyclable packaging materials. Their commitment to environmental preservation is a reflection of their holistic wellness concept, which takes into account both the health of the environment and their clientele.

Holistic Vybez is distinguished not only by its superior sea moss supplements and goods but also by its everlasting dedication to family, health, and customer support. The goal of a healthy world is progressively coming to pass thanks to Naeem and Ashley Akbar’s ongoing innovation and growth.

This content is brought to you by Noan Noah

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Plasma You Sell in East Kansas City Could End up in Medicine an Ocean Away




By Suzanne King

Michael Mullen donates blood plasma every Tuesday and Thursday. He has for 12 years.

  1. The U.S. is one of a handful of countries that lets people sell plasma.
  2. Plasma donation centers in the United States, including 11 in Kansas City, supply 70% of the world’s plasma.
  3. Drug therapies made from the plasma are life-saving to people with rare, chronic diseases.
  4. But critics worry that the effects of frequent, long-term donation are unknown.

The money it brings in — a little over $100 a week — augments what he makes as a chef. He’s come to rely on it.

“It helps supplement bill paying,” he said recently, smoking a cigarette outside the Biomat USA donation center on East 63rd Street where he’d just spent an hour and a half in the donation chair. “If I didn’t have it, I don’t know. I don’t know what would happen.”

Kelcey Gordon is out of work and said he’d struggle without the money he makes donating twice a week. Standing outside the same for-profit plasma donation center, one of 11 in the Kansas City area, he said he is grateful for the extra cash it represents.

In the $35 billion plasma pharmaceutical industry, Mullen, Gordon and some 3 million other U.S. adults supply the raw material the industry counts on.

The plasma they deposit every week is tested, processed and separated into protein parts that become medicine to treat rare, chronic conditions like immune deficiencies, autoimmune diseases and bleeding disorders.

Their plasma, collected at a storefront that shares a shopping center with a Thriftway and lies just a block east of Cash America Pawn, will end up in medicines sold for hundreds or thousands of dollars a dose. It will likely treat patients on the other side of the world.

Thanks to regulations that make the United States one of the few countries to let companies pay for plasma, and because people here can donate as often as twice a week, the U.S. supplies about 70% of the world’s plasma.

“This is the world basket of plasma,” said Peter Jaworski, a Georgetown University professor who studies the plasma economy.

The industry — with the enthusiastic backing of organizations that advocate for people suffering from the diseases that plasma therapies treat — says the system works. If people weren’t paid to donate, they argue demand could not be met. That would mean thousands of people would die or be unable to live normal lives.

The plasma centers, most of them owned and operated by pharmaceutical companies based overseas, say their business models also inject money into local communities.

Donation centers employ phlebotomists, security guards and screeners. And the payments made to donors — which vary based on how often someone donates and, in some cases, how much a donor weighs — go back into the local economy.

But doctors and public health experts caution that no one really knows what frequent plasma donations over many years could mean for donors’ health.

And they worry that poor people provide a bulk of U.S. donations at plasma centers. Plasma centers tend to set up in disadvantaged neighborhoods and rely on incentive programs designed to make donors give again and again.

Plasma centers push people to give as often as possible, but they don’t disclose the unknown risks of frequently extracting plasma from their blood for many years.

“People perceive it as a better alternative than high-cost loans that lead to debt,” said Emily A. Gallagher, an assistant professor of finance at the University of Colorado. She co-authored a study about the intersection between plasma donors and payday loan customers.

“Without knowing the longer-term health consequences,” she said, “it’s analogous to a loan against your future house with an unknown interest rate.”

Therapies from donated plasma

The blood running through your veins includes red blood cells, white blood cells, platelets and plasma. Plasma — a yellow-tinged liquid — accounts for more than half of your blood.

It is 90% water, but also contains proteins vital to living a normal life. When someone has plasma that lacks  — or is short on — certain proteins, they end up with rare and chronic diseases. Medicines made from healthy human plasma treat those diseases by supplementing the lacking plasma.

For someone with primary immune deficiency, a condition in which a person’s immune system doesn’t function properly, it takes 130 donations to cover a year’s worth of treatment. For a person with alpha-1 antitrypsin deficiency, a potentially fatal disease that can lead to organ damage, that number jumps to 900 donations a year. And for someone with hemophilia, a blood clotting disorder, it takes 1,200 donations of plasma to make a year’s worth of medicine.

Scientists have known about blood circulation since 1628, and blood transfusions began almost that long ago. In 1665, a British doctor figured out how to keep a dog alive by transfusing blood from other dogs.

At the beginning of the 20th century, scientists began to figure out that different people had different blood types. And by World War II the value of blood plasma was well understood.

In 1940, researchers developed a process to break plasma down into individual components to treat patients. That’s essentially what happens to plasma donated today.

Wild west of plasma collection

Donated plasma goes through a process known as fractionation, which separates plasma into various protein parts. Once it is tested and cleaned — a process that can take up to a year — those proteins are pooled with other donors’ plasma and made into therapies.

Plasma therapies for patients on the receiving end are considered extremely safe today. Tests designed to find plasma tainted by disease are highly effective. And plasma pharmaceutical makers won’t use plasma until a donor has given at least twice and the donor has passed a health screening. In addition, plasma is treated to kill any lingering virus before it is used in medicine.

But in the 1980s, before it was understood that viruses like HIV could be transmitted through blood, plasma transfusions proved deadly.

In the United States, 63% of hemophiliacs contracted HIV after receiving plasma from infected donors. Others contracted hepatitis B and hepatitis C, diseases that are also transmitted through blood.

After those “wild west days of plasma collection,” Jaworski said, the industry underwent drastic changes. That included pharmaceutical companies taking over independent donation centers. In recent years, those centers have multiplied.

Pharmaceutical companies operate a combined 1,000 collection centers in the United States. That’s compared to 300 in 2005.

The business of taking human plasma and turning it into medicine is worth about $35 billion this year. And that could nearly double by 2032, according to Fortune Business Insights, a market research firm.

Growing demand for plasma donations

Kansas City-area donation centers are all owned directly by the companies that make the plasma-derived drugs.

They include the Biomat on 63rd Street, owned by Grifols S.A., a Spanish company. Other Kansas City donation centers are owned by CSL Ltd., based in Australia, Takeda Pharmaceuticals from Japan and Octapharma Plasma, out of Switzerland.

Experts say the influx of new donation centers in recent years follows growing demand for plasma therapies. That’s because scientists are figuring out that more diseases can benefit from plasma medicines. During the COVID pandemic, plasma transfusions from previously infected donors were tried as a treatment, but its effectiveness isn’t understood because scientific testing was lacking.

Demand for plasma therapies is also up because more people are being diagnosed with diseases that could benefit from them.

For example, improved newborn screenings mean more people know they have primary immune deficiency, diseases that affect an estimated 500,000 people. But according to the Immune Deficiency Foundation, “tens of thousands” of others remain undiagnosed.

Only the United States, Germany, the Czech Republic and a few other countries allow payments for plasma donations. The countries that restrict payments have to rely on imports, primarily from the U.S. There is no synthetic alternative to human plasma.

That’s why Jaworski wants more countries to allow paid plasma.

“There isn’t a single country in the world that collects enough plasma to meet demand unless they compensate donors,” he said. “The most important moral mission for a system of blood and plasma collection is to meet the needs of patients.”

By that standard, he said, the American system is unquestionably succeeding.

“America not only collects enough for its own citizens,” he said, “it also collects enough for the rest of the world.”

Is donating plasma twice a week safe?

Through a process known as plasmapheresis, the plasma collected at for-profit centers is taken out of a donor’s arm as whole blood, pumped into a machine that separates out plasma and returns red blood cells and other components of blood to the donor.

That process, known as source plasma collection, is regulated by the U.S. Food and Drug Administration and also overseen by the countries that import the plasma. Donors spend about 90 minutes in the donation chair.

Nonprofit blood centers like the Community Blood Center of Greater Kansas City collect plasma through whole blood donations. Plasma is separated out once blood has been donated. But that process yields much less plasma.

Nonprofit blood banks don’t pay for donations. For one thing, hospitals won’t accept blood from a donor who has been compensated. And the World Health Organization advises against paying for donations. It’s considered risky because donors who give blood because they need money could be more likely to misrepresent their health history — essentially hiding the likelihood that they’re carrying blood-borne infections.

Because plasma used in pharmaceuticals is so thoroughly processed, the risk posed by paid donations is lower. Jaworski said it’s proved to be extraordinarily safe for 30 years. He argues that objections to paid plasma donations are unrealistic when so many people rely on plasma therapies.

He compared paying people for their plasma to hiring firefighters rather than relying on volunteers. The payment doesn’t diminish the good act, he said.

“At some point, you get too many fires and you have to pay people to put out the fires,” he said. “We hit that tipping point (for plasma) more than 20 years ago.”

People who rely on the therapies created from paid-for plasma are actively campaigning to be sure paid donations continue.

The Immune Deficiency Foundation has a program meant to recruit more paid donors. “Your work will encourage donors to continue donating and, in turn, encourage their friends and family to donate plasma as well,” the organization’s web page says.

But while plasma-derived therapies are critical for the patients relying on them to live a normal life, some doctors worry about what plasma donation could do to donors.

Plasma collection centers advise donors to drink lots of water, get sleep and have a healthy meal before donating. In the near term, donors are told to be prepared for certain temporary side effects like dehydration, dizziness and fatigue.

On its webpage, CSL Plasma also warns about the possibility that donating frequently for a long period of time can deplete immunoglobulin levels, which can lower a person’s ability to fight off infections.

What is the downside to donating plasma?

Dr. Morey A. Blinder, a hematologist at Washington University, said that’s definitely something frequent plasma donors should worry about. Long-term studies, looking at people who donate plasma twice a week, year after year, simply haven’t been done, he said.

“You’re depleting a person’s proteins in their bloodstream,” he said. “And it’s hard to know what the effect of that is.”

Proteins regenerate, he said, so in the short term, people can keep up. But it’s unclear what happens over time.

And while the plasma collection centers monitor donors’ health, their incentive isn’t to limit donations. It’s to collect as much plasma as possible.

“There are financial incentives to these donors to stay on schedule and keep donating,” Blinder said.

Many doctors would feel more comfortable, he said, if that pressure were reduced. Blinder also would like to see more frequent checks of donors’ blood levels, and a weekly, rather than twice weekly, donation limit.

“People in this field would say that would be an advantage,” he said.

Blinder also questions whether the pharmaceutical companies are paying donors fairly. Donors take home around $50 per donation, but the medicine it’s eventually turned into can cost $200 a gram, perhaps $16,000 per treatment dose, depending on the illness.

“We don’t have a good sense of the margins they earn on the plasma,” said Gallagher, the University of Colorado professor.

Right or wrong, the paid plasma business has become a reasonably big thread in the country’s social safety net. Gallagher found that people tend to donate plasma so they can get extra money and avoid taking out high-interest loans to make ends meet. Donors range from college students to single parents to low-wage earners who just need extra cash.

BioLife Plasma Services is promising new donors “up to $800.” And CSL Plasma advertises new donors “over $700 your first month.”

Whether or not donors are getting a fair payment, selling plasma is tempting a growing number of Americans. And, like Mullen and Gordon, they’re relying on the extra cash.

That’s why most mornings, before CSL Plasma’s donation center at 37th and Broadway opens for business at 6 a.m., a line of ready donors is already waiting outside.

This article first appeared on Beacon: Kansas City and is republished here under a Creative Commons license.

This story was originally published by The Kansas City Beacon, an online news outlet focused on local, in-depth journalism in the public interest.


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