The sperm donation industry is out of control and needs to be regulated.

I recently wrote the following in support of this Citizen’s Petition to the FDA, submitted by Wendy Kramer, the founder of the Donor Sibling Registry. The purpose of the Petition is to persuade the FDA “to look into the state of affairs surrounding the sperm donation industry, and then develop the appropriate and much needed regulation/oversight.”

I couldn’t agree more.

______________________

As a physician and donor-conceived person, I request that the Cellular, Tissue and Gene Therapies Advisory Committee convene to review the concerns addressed by Ms. Kramer in this Citizen’s Petition. Currently, donated gametes are regulated as human cell, tissue, and cellular and tissue-based products (HCT/P) by the Center for Biologics Evaluation and Research (CBER) under 21 CFR Parts 1270 and 1271.[i]

Donated gametes are fundamentally different from other HCT/Ps in that they are not being used to treat a disease – they are used to create new people. These individuals cannot possibly consent to the conditions of their own creation. Because of this unique circumstance, gamete donation must be considered separately from other HCT/Ps.

Current FDA requirements focus primarily on protecting the gamete recipients (ie., potential parents) from communicable disease. These requirements have repeatedly failed to protect the most vulnerable population – the children – from preventable adverse health outcomes that I describe below. Similar to Ms. Kramer, I focus primarily on sperm donation, though many of the concerns specified below are applicable to egg donation as well.

Hypertrophic obstructive cardiomyopathy (HOCM) is one of the most common autosomal dominant diseases with an estimated prevalence of 1 in 500.[ii] It typically presents in early to middle adulthood, and the first symptom can be sudden cardiac death in an otherwise healthy individual. Fortunately, early identification through screening of individuals known to be high risk can allow implantation of potentially life-saving automatic internal cardioverter-defibrillators (AICDs). Because there is no requirement that a record of live births be kept, there is no way to alert donor-conceived children whose genetic parent or half-sibling has been diagnosed. Far from speculative, this specific scenario has already happened and was extensively documented.[iii] As of 2009, at least one of these children has died. There is no way of knowing exactly how many children may be affected.

Additional genetic diseases transmitted to children from donor sperm, most likely unknowingly, include Autosomal Dominant Severe Congenital Neutropenia,[iv] Fragile X,[v] Long QT syndrome,[vi] and Lynch Syndrome,[vii] among others.

Excessive financial compensation has long been recognized as coercive in human subjects research. Advertising to prospective sperm and egg donors emphasizes the monetary gain from donating, providing incentive to not disclose medical history that might exclude them.  One very recent, highly publicized case involved a former sperm donor who misrepresented himself as having a genius IQ and advanced degrees who was later found to have schizophrenia and a criminal record.[viii] There is currently no independent verification of personal and family medical history.

The true scope of these problems is impossible to know. Because of the following circumstances, we suspect these issues could potentially impact thousands of Americans, if not more:

• Estimates of how many children are conceived using donor sperm in the US are based on data that is almost 30 years old. In 1988, it was estimated to be 30,000 offspring/year.[ix] We have no way of knowing how many people are created through donor sperm today, but if this number is at all accurate, over one million donor-conceived people have been born since 1980.
• Frozen human sperm has been used up to 40 years after collection.[x]
• Shockingly large numbers of offspring may result from a single prolific donor. One donor has been documented as fathering over 150 individuals, but the true number of his offspring is unknown, and may be much higher.[xi]
• There is no standardized identification system for each donor, therefore one man can donate at multiple banks without disclosing this information.
• Families are not required to register live births with the sperm bank. All other registries, such as the Donor Sibling Registry, are voluntary.

In recognition of these issues, other countries have changed their policies and increased oversight. For instance, the United Kingdom limits the number of children from a single donor to 10, mandating the identity of the donor be released when children turn 18, screening for genetic disorders, and providing donors with only modest amounts of money to cover expenses.[xii]

The American Society of Reproductive Medicine (ASRM) has published a list of industry recommendations, some of which address the above issues.[xiii] This is far from adequate as the recommendations are not binding, and sperm banks in violation of these recommendations suffer no consequences from either the ASRM or the FDA. A wolf cannot guard the hen house.

The FDA must act to protect children created through the use of donor eggs and sperm. A vital first step would be a meeting of the Cellular, Tissue and Gene Therapies Advisory Committee to discuss the issues raised in this document and Ms. Kramer’s Petition.

 

[i] Tissue and Tissue Products, http://www.fda.gov/BiologicsBloodVaccines/TissueTissueProducts/default.htm, accessed January 15, 2017.

[ii] Shah, M. Hypertrophic cardiomyopathy. Cardiology in the Young (2017), 27(Suppl. 1), S25–S30.

[iii] Maron, B.J., et al. Implications of Hypertrophic Cardiomyopathy Transmitted by Sperm Donation. JAMA (2009), 302(15):1681-4.

[iv] Boxer, L.A., et al. Strong evidence for autosomal dominant inheritance of severe congenital neutropenia associated with ELA2 mutations. J Pediatr (2006), 148(5):633-6.

[v] Wirojanan J., et al. A girl with fragile X premutation from sperm donation. Am J Med Genet Part A (2008), 146A:888–892.

[vi] Heisel, W. Code Unknown: Trying to connect with sperm donor through online community. Center for Health Journalism, http://www.centerforhealthjournalism.org/2014/12/18/code-unknown-trying-connect-sperm-donor-through-online-community, accessed January 15, 2017.

[vii] Sperm donor with genetic illness speaks out, Copenhagen Post, http://cphpost.dk/news/national/sperm-donor-with-genetic-illness-speaks-out.html, accessed January 15, 2017.

[viii] Hauser, C. Sperm donor’s profile hid mental illness and crime, lawsuits say, New York Times, https://nyti.ms/1SMA6rx, accessed January 15, 2017.

[ix] U.S. Congress, Office of Technology Assessment, Artificial Insemination: Practice in the United States: Summary of a 1987 Survey—Background Paper, OTA-13P-BA-48 (Washington, DC: U.S. Government Printing Office, August 1988). http://www.princeton.edu/~ota/disk2/1988/8804/8804.pdf, accessed January 15, 2017.

[x] Human Fertilisation and Embryology Authority. Freezing and storing sperm, http://www.hfea.gov.uk/74.html, accessed January 15, 2017.

[xi] Mroz, J. One sperm donor, 150 offspring. New York Times, https://nyti.ms/1Axj4VZ, accessed January 15, 2017.

[xii] Human Fertilisation and Embryology Authority. HFEA agrees new policies about family donation and the number of families one donor can create,  http://www.hfea.gov.uk/6518.html, accessed January 15, 2017.

[xiii] Ethics Committee of the American Society for Reproductive Medicine. Interests, obligations, and rights in gamete donation: a committee opinion, http://www.asrm.org/uploadedFiles/ASRM_Content/News_and_Publications/Ethics_Committee_Reports_and_Statements/interests_obligations_rights_of_donor.pdf, accessed January 15, 2017

 

 

 

 

S17: Restore and Expand Vital Public Services for the 99%

I’ll be there.

Healthcare for the 99%

Tuesday, Sept 17 @ 5pm: Rally and March to Restore and Expand Vital Public Services for the 99%

Rally at Dag Hammarskjold Plaza in front of the UN (2nd Ave and 47th St, NYC)

March to Bryant Park

As Occupy Wall Street’s 2^nd anniversary approaches, austerity politics proceed unfettered in the halls of Congress.

On September 17, the UN General Assembly will convene to discuss international anti-poverty and public health goals to be achieved by 2015. Against the backdrop of the UN and the OWS anniversary, labor and community activists will rally to demand an end to austerity and the full funding of human needs – locally and globally.

The Robin Hood Tax could raise billions of dollars every year to help ensure that every American has access to high-quality healthcare. This 1/2 a penny tax on Wall Street trading could fund a universal, Medicare-For-All system without mandates, fines…

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July 24: Funeral March & Rally for Brooklyn Healthcare

Very important rally to highlight increasing disparity in healthcare system.

Healthcare for the 99%

On Wednesday, July 24^th, doctors, nurses, activists and advocates will march across the Brooklyn Bridge in a funeral procession – to mourn the impending closure of Long Island College Hospital (LICH) and the continued privatization of our healthcare system.

 

While NYC’s population continues to grow, healthcare resources continue to be concentrated in the wealthy neighborhoods of Manhattan. Meanwhile, hospitals and clinics in Brooklyn that serve working people, immigrants, and people of color are being shut down.

 

• Governor Cuomo has put a Wall Street banker, Stephen Berger, in charge of healthcare planning in Brooklyn. Yet, Cuomo controls the SUNY system and has the power to keep LICH hospital open for the community. 
  
• SUNY Downstate claims LICH is losing millions of dollars each month and it can’t afford to keep the hospital running. Meanwhile, “34 of the top 100 highest paid state employees are employed by SUNY Downstate…

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Christianity + Capitalism = Your Health Care?

Stories like this are the reason I started this blog.  

There is a growing trend in the healthcare industry toward consolidation. The reasons for this are pretty clear – in the face of bloating administrative fees, increasingly complex medical coding and billing, and the incredibly difficult to interpret Affordable Care Act, it is becoming harder and harder for small, community-founded hospitals to stay in business. Small hospitals have less market share.

One solution has been to sell out. Small hospitals are being bought by larger hospital system (both for-profit and not-for-profit), as happened in my own hometown of Emporia, Virginia. Greensville Memorial Hospital became Southern Virginia Regional Medical Center, which is owned by a large, national for-profit hospital chain. According to the website, “Southern Virginia Regional Medical Center opened in December 2003 replacing the aging Greensville Memorial Hospital. The state-of-the-art, 80-bed, acute care medical center offers the latest healthcare technology to more than 50,000 residents in Emporia and the surrounding communities. Health services include inpatient, outpatient, emergency, medical and surgical care in a customer-focused environment.”

Let’s say you’re a pregnant woman. Maybe you didn’t realize you needed a “customer-focused environment” when deciding where to give birth (if you’re lucky enough to be able to decide).  Shortly after opening, Southern Virginia Medical Center closed its small OB department because it wasn’t profitable enough. Guess a customer-focused environment isn’t compatible with ushering new life into the world.

Considering the problems with consolidation, there is another surprising wrench thrown in – the Catholic church. Until reading this article, I had no idea that “Of the largest healthcare corporations in the country, five of six are administered by the Catholic Church.”  Catholic hospitals must abide by the Ethical and Religious Directives of the church, which have resulted in multiple situations that ended up with patient autonomy and preference tossed by the wayside in order to fulfill these top-down requirements that aren’t even in line with many patient’s personal beliefs or wishes. This article summarizes several of these situations quite nicely.  This article also details some of the context surrounding the merger.

I’m not trying to malign religious people, including Catholics. Many groups that identify as Catholic, such as the Catholic Worker Movement, have a long history of selfless devotion to social justice and alleviating suffering of those less fortunate.  However, we need to take a long, hard look at the conflict of interest that arises when Catholic corporations buy up smaller community hospitals and then dictate that those hospitals conform to their particular flavor of ethics, especially when they do not consider patients’ best interests or preferences.

More to come on this. The consolidation trend in healthcare right now is sure to have some implications that aren’t entirely clear yet.

MergerWatch is an organization which describes its focus as “We work directly with communities to find ways of protecting patients’ rights and access to care when non-religious hospitals are proposing mergers with religious health systems.” Definitely going to keep a close eye on this one.

Psychiatric inpatient treatment – what are we doing?

Poster from the Icarus Project’s 10 year anniversary

The triangular relationship between modern psychiatry, pharmaceutical companies, and the people who get diagnosed with mental illness is probably one of the more contentious in medicine, especially in the eyes of the public. The re-framing of mental illness, especially depression, as a “chemical imbalance” was at once a pharmaceutical marketing trick and something that some patients felt powerfully reduced stigma and guilt of having a diagnosis. Psychiatrists are rated below other medical specialties in public polls identifying the most trustworthy professions, though they’re still in the top 10.

Peer support for patients outside of mainstream medicine exists has sprung up in groups like the Icarus Project, which claims to be “navigating the space between brilliance and madness” and conceptualizes mental illness not as diseased state that must be cured, but as a “dangerous gift.” I have mixed feelings of discomfort and excitement at that idea, which may be biased by my own personal negative encounters with local people in a related group. Perhaps it depends on the consequences of such a construction. Does it empower patients (or certain subsets of patients) and help them feel they are valued members of society and get them back to being capable of doing what they want to do with their lives? If so, great! That’s the ultimate goal of medical treatment – to restore function and the ability to live to a person who may have been incapacitated by their psychiatric condition. But restoring function is kind of a tricky thing to define here. It’s not the same as operating on a broken bone – function restored! What if people are able to go back to work after being out on disability for mental illness but are traumatized from what they experienced, say, on an inpatient psychiatric ward? What if some fundamental shift occurs because they now have a history of psychiatric hospitalization, not just through external stigma, but due to internalization of the fact that they are diseased? I don’t think any doctor wants that, but it may be hard for doctors to know if they’re having this effect.

I just completed an unpublished memoir written by a man who has Bipolar I disorder. This is the most serious form, characterized by alternating episodes of elevated and depressed mood, or as the author describes, “You have mania, depression, then something else that’s neither mania nor depression but something new that’s the result of mania and depression having been there.” Maybe memoir doesn’t quite capture it all –  it was at once the story of his experience with Bipolar disorder,  a critique of his American psychiatric treatment, some radical Christian theology, all mixed with an impressive dose of self-awareness.

He writes about the phenomenon of becoming a person who is undergoing psychiatric treatment, “He will become no longer someone to whom something strange is happening. He will become that something strange.”

Before I discuss the content of his book more and reflect on lessons I took from it, I want to provide some background about my experience with psychiatry and mental illness. I’ve had a longstanding interest in psychiatry; when I entered medical school, I was certain I was going to choose that as a specialty. I envisioned it to be very fulfilling to be able to respond to a person who is suffering, comfort them, and contribute to the restoration of their function and pursuit of a meaningful life. I was interested in how new research from neuroscience and positive psychology might inform the field and improve treatment. I have many thoughts and questions about how doctors in training are taught to conceptualize mental illness, what the patients’ experiences are like, and how a good psychiatrist or primary care doctor would treat these patients. (Actually, after reading the memoir, I have feel less comfortable using terms like “patient” when applied to an otherwise healthy person with a primarily psychiatric issue. We’ll just keep it for simplicity for the time being.)

My own experience during my psych rotation was pretty similar to what I expected from prior reading. Psychiatrists, like the vast majority of doctors, deeply care about their patients and want to help them get better. The most widely accepted theory of illness, especially mental illness, and approach to treatment is the biopsychosocial model – the theory that an individual’s biological/genetic make-up, thoughts/beliefs, and environment all interact to promote disease (or protect against it).

We were taught that maintaining boundaries is more important in psychiatry than other specialties, because overstepping these can be coercive or confusing to a patient. Psychiatrists don’t touch their patients much, if at all. Curiously, in other fields, patients often feel dissatisfied if they are not physically examined by the doctor. “The laying on of hands can be therapeutic and builds rapport,” according to the Tarascon Emergency Department Quick Reference Guide. Instead, the mental status exam and clinical interview are the most important assessment tools for psychiatrists.

Reading his memoir reaffirmed that mental illness is dramatically different from other types of illness, despite our brains (and the things that go wrong with them) being part of our bodies. There is absolutely no question that the author has been diagnosed with Bipolar I and was manic (or at least hypomanic) when he wrote the piece. His writing at times demonstrates some pretty classic symptoms of formal thought disorder that people can exhibit during manic episodes – loosening of associations, flight of ideas, stilted speech at times, tangentiality, even some ideas of reference.

It’s not hard for me to imagine him trying to tell his story and ideas to a busy psychiatrist, with the doctor all the while checking off symptoms and maybe writing some notes, but completely missing the point of what he was trying to convey. Maybe a doctor casually mentioned “you should write a book.”

The main criticism of American psychiatry is nicely summarized early on:
“We are radically connected to each other, and radically loved. When we fully validate each other, validating each other’s humanity, we are redeemed from the separation that causes us to a) lose hope and b) forget who we are…Psychiatry doesn’t fully validate the humanity of the mentally ill. Psychiatry is a product of a society which operates using stigma. Stigma exists where there should be solidarity. Psychiatry misses our radical connectedness with each other.”

What if he’s right? In the realm outside “right” and “wrong,” his experience is his experience, and if he feels that psychiatry doesn’t affirm him as a human first, then he IS right and the specialty has mostly failed him.  He is strongly influenced by theology, and while reading, I began to think about how frequently “healthy” people are not only willing to submit to the possibility, but are absolutely certain of the truth of their religion’s teachings, even if they include (and they almost always do) aspects that seem to defy the laws of nature, like Jesus rising from the dead and ascending into heaven. The DSM-IV, psychiatry’s Bible, explicitly states that religious beliefs are not included in the criteria for delusions and hallucinations. It is very obvious and yet very strange to include such a distinction. Many, perhaps most, people very strongly hold beliefs that seem bizarre to people outside of the religion. Does this have any implication for what it means to be mentally ill? I’m not sure.

When I was doing some overnight shifts in the ER on my psych rotation, I was surprised by how bluntly the psych resident asked incredibly personal and complicated questions. “Have you felt that there are ideas or messages out there that are special to you or that only you understand?” or “Have you felt like life is not worth living and you would be better off dead?” and then seem annoyed when the patient broke out into a really detailed story. That’s not something you can really say yes or no to, then shut up, and wait patiently for the next question. But that’s exactly what the resident wanted. Of course, the resident was working busy overnight shifts and was understandably tired. And the primary goal of an ER assessment is to determine if a patient needs admission to the psych unit, whether voluntarily or otherwise. But isn’t there something about that process that could be therapeutic or traumatizing in itself? Again, it’s not the same as working someone up for new chest pain to rule out a myocardial infarction by ordering a panel of tests and basing the decision to admit on their results, but the profession has tried to make the approach similar in psychiatry.

When I’ve spoken to manic or psychotic patients who are explaining a delusion, I have found it tempting to interrupt them to continue the interview, probably for several reasons. To be completely honest, one is that being in the presence of a floridly psychotic person for a long time can make me uncomfortable, and I suspect this isn’t uncommon among doctors. This is something that I wish to work on, personally, but it is the reality of the situation right now. Also, the specific content of their delusions and thought disorder is not the most relevant to diagnosing and determining their treatment plan. For example, it doesn’t really matter if a patient comes in saying he can hear his dead mother and uncle fighting in his head and telling him to do things – what matters is that he is having command auditory hallucinations, which is highly associated with schizophrenia. Regarding the content of the thoughts, distinctions are made between “bizarre” and “non-bizarre” delusions – bizarre is something that could not actually happen, ie., “a device is implanted in my head by the government and projecting my thoughts,” whereas non-bizarre could possibly be true in the real world, ie., “my wife is cheating on me.” There is no discussion among psychiatrists about whether the patient might actually be onto something, or expressing some deep, fundamental, metaphorical truth in their mania. Yet the specific content of the thoughts and not the pattern, is obviously what concerns the patient.

So what we’re actually doing is taking something that is deeply personal and “real” to the patient, and placing it in the appropriate pathological category to come up with a differential diagnosis of diseases, which are by and large patterns of behavior that are fairly consistent in general, but not specific content. Essentially we are listening to them in order to gather specific information, not to meet them, human-to-human, and reflect on the nature of our shared reality. I believe this is what he means when he says, “Your experience is deeply unvalidated . It is devalued. It is pathologized. An experience is so radically unvalidated that it’s (sic) character as an experience is stripped from it.”

Later, he describes what he wants from mental health professionals, “How can I make you understand when I don’t? But if I can show you that crater–if I can detonate a charge that creates a crater–it is conceivable that you might make a place for us, the crazy people, that isn’t based on exclusion and stigma. You might be like, ‘I don’t understand all the details of what you’re saying, but it sure sounds like something was going on. It sure sounds like there’s not just an absence of culture and a lack of sanity but there is more going on in you and the thing is that this means there is more to me than I realized. For I am you and you are me. I have only been so engaged with my life. There’s more that I didn’t realize was there. I’m not going to treat you like you’re weird any more. I’m not going to create a divide between us. Let’s everybody heal.’”

I am very much with him in wanting to understand more about his experiences and what led them to seek treatment (whether of his own accord or not). It was so helpful to hear him describe his symptoms in the context of his entire life. Yet I found myself wondering if this person’s judgment could really be trusted, and how representative of others with bipolar disorder his experience is. Which curiously got me wondering what it means to trust someone’s judgment and how arbitrary the criteria really are.

That’s the thing about people with bipolar disorder. Being around them has always made me fall into some sort of hyper-subjectivity and frame shift which isn’t really embraced by medicine. Medicine increasingly seeks to identify patterns and develop treatment algorithm patterns to implement the “standard of care.” Payment is based on DSM-IV and ICD-10 codes – numbers that represent a disease process, a condition, an experience. After reading this memoir, I can understand how bizarre and unappealing that seems to a manic person, who is at once asserting that he be treated as an individual by medical staff, yet also calling for the recognition that all humanity is bound by a shared experience, and his suffering is our suffering. I don’t think that MUST be necessarily in conflict, but I fully admit I have NO ready solution.

He starts with some very compelling descriptions of his thoughts and his experiences which immediately resonate with me as a person deeply interested in social justice. “Madness is lonely. That’s why I’m writing, to address the deep loneliness of insanity. It’s a source of solace to believe that a solidarity can or might exist. This solidarity would rescue us from the loneliness. This solidarity must be based on the recognition of the full humanity of the madman or woman. It is not just a disease or a demon, it is a person who suffers, just like we all suffer. My suffering is your suffering, and yours is mine. I am radically flawed–so are you. This is the key to our shared humanity and our solidarity. My experience is not mine, and your experience is not yours.” I agree. I don’t think there is anything about modern medicine that is in contradiction to that philosophically, but I no doubt think that the practical treatment of psychotic and manic patients does not really affirm this model.

To say that I was left with more questions than answers is an understatement. I think we should be on the verge of a paradigm shift in how mental illness is conceptualized and treated. But I do not know how that would be possible under our current payment system.

No one said this would be easy.

Really interesting article over on slate.com recently that discusses how 3rd year of med school is the real beginning of a subtle but profound transition between being an idealistic and empathetic med student to being jaded and bitter. Finishing up my 3rd year of med school, I can completely empathize with this (no irony intended).

Dr. Danielle Ofri writes “I discovered that the third year of medical school is when these high-minded traits begin to erode, an observation that won’t come as a surprise to anyone who’s been through traditional medical education…It’s no wonder that the third year of medical school figures prominently in studies that document the decline of empathy and moral reasoning in medical trainees.”

I definitely have experienced these feelings from time to time. Sometimes it’s fairly subtle, for example, thinking a patient in pain is being kind of whiny to keep getting Dilaudid. Being in the hospital seems to make everyone, doctors and patients, kind of whacked out after awhile.

On the worst days, I think this whole medicine thing is a sham and the most therapeutic action to take is to create social conditions that make it easier for people to realize their deep connection with not only all of humanity, but with all of existence. It’s more important now than it ever has been for people to step up and provide guidance for the field of medicine – that unique combo of art and medicine – to grow, or we’ll continue to stagnate under the weight of profiteering, bureaucracy, and the delusion that what we’re doing is 100% pure evidence-based science. 

It’s not. 

Overall, the year has definitely not left me feeling hopeless. If anything, it’s provided first-hand insight into the problems we’re facing, and for that, it’s been invaluable. It’s provided opportunity for personal reflection, even though I haven’t always taken advantage of it. 

I’ve observed that the people who really seem to struggle are those who have difficulty with humility. I don’t think it’s entirely their fault – they’re selected to attend medical school because they’ve achieved highly from an academic standpoint (though whether we’re choosing the “right” type of person for medicine is a separate but related topic). They’re rewarded for performing better than their medical school peers. It hit me recently how ridiculous a message it sends to assign class rank to medical students on one hand while telling them “you need to learn how to work in a team!” on the other – look, it’s not so easy to switch those mindsets at the drop of a hat. yet it is necessary to have some type of criteria to determine how to select candidates for residencies. I don’t blame those individuals for being hyper-competitive – it’s an impulse I certainly feel at times – but I do think we need to seriously re-evaluate how we’re training doctors. I’m definitely excited about reading Dr. Ofri’s book. The Mindful Medical Student by Dr. Jeremy Spiegel is a book that seemed to go under the radar of most reading lists, but I found it very helpful before I started med school, and I’d like to read it again after third year.

But I don’t have the time – I’m too busy cramming scientific facts for the next multiple-choice test.

 

Grand Frowns at the VA

I’ve been on my Internal Medicine rotation at the local Veterans Association (VA) hospital. I’ve really enjoyed it – the Veterans are almost all super appreciative, friendly people and make great patients to learn from. They’re used to medical students and mostly don’t mind our repetitive and lengthy interviews and exams. In fact, many seem to enjoy being part of future doctors’ educations and often wish me good luck after I see them. Maybe it’s the culture of service and commitment to their country that the Veterans really seem to take to heart (despite the shady deeds of the US military in the name of “protecting” Americans but in reality pushing imperialism and exploiting other less powerful countries – but that’s way beyond the scope of this post!) One Veteran told me the other day, “The VA is a great place to learn! You’re going to see some really sick patients!” As morbid as that sounds, it’s true. The patients at the VA seem to have a disproportionate amount of medical complications and coexisting conditions that are generally highly predominant in the working class (and, well, all of the developed world)– COPD, heart failure, obesity, diabetes, often all at the same time. I’ve found them to be extremely trusting of and grateful to physicians and even medical students. Like many patients with complicated medical conditions affecting multiple organs, they can be shuffled from specialist to specialist. They sometimes will start explaining a medical problem only to be told by that particular doctor that they are there to manage only a certain organ system. I’ve seen them often leave appearing pretty frustrated and confused.

I feel compassion for all patients I see, but I find myself feeling extra protective towards the VA patients. They require much care and coordination and it’s no surprise the VA is an expensive system. It highlights the importance of a large, motivated, talented primary care workforce and having a single competent person overseeing the care and referral to specialists. Yet, our American healthcare system rewards specialists with more money and prestige.

Often, I’ve heard residents and fellows talk about how inefficient the VA is and how much better private hospitals are. I’m not exactly sure what experience they have with those hospitals as the other training hospital for the program is a large public tertiary care center, taking on a ton of disproportionately uninsured patients. If you qualify for the VA and choose to use this service (as I understand it, Veterans can also choose to be privately insured through a job or otherwise), you have to use only VA facilities and doctors unless the technology isn’t available at the VA, in which case they will refer you to a place that has the appropriate services. Some of the patients end up traveling hours to get to the clinic. I can’t help but think this problem would be solved if the veterans’ care extended to any hospital or doctor. If we had single payer, national health insurance.

This past Friday, the day I leave for the Students for a National Health Program summit, we had a Grand Rounds presentation from a senior staff attending about the ACA and Medicaid in Virginia! For the most part, the presentation was mostly numbers about how coverage in Virginia would change if Medicaid expansion was implemented and the state of Medicaid in Virginia. It seemed pretty nonpartisan until he began to use buzz words like “large government program” and it started to become clearer which team he was batting for. When he mentioned Delegate John O’Bannon’s position on the panel involved in deciding whether and under what conditions Medicaid expansion will occur in Virginia, it seemed pretty apparent. He said that Virginia was set to become one of the states that did not accept Medicaid expansion until “the Left” colluded to put the transportation bill in jeopardy. He did not mention how an independent economic study determined that Medicaid expansion would cost less than not expanding it, which I’ve written about in previous posts. He also didn’t mention the terms of the Medicaid expansion. I was feeling pretty irritated. I’m in a pretty vulnerable position though, since I’m interested in going into general Internal Medicine, it’s to my advantage to not do anything that would negatively stand out and might result in a bad evaluation. No one wants to hear a med student get ornery during Grand Rounds when people by and large just want to get on with their day.

But the temptation was too much. After the presentation, I couldn’t pass up the opportunity to ask a single question which I attempted to frame as diplomatically and non-confrontationally as possible. “One of the criticisms I’ve heard about Medicare and Medicaid is that as soon as they are contracted out to private insurance companies, they become more expensive. What’s going to happen with the Virginia Medicaid expansion – will it get contracted to private companies and will it become more costly then too?” He replied that whether it was more expensive was a matter of some debate (it’s not), and that the commission was trying to make certain that every person’s Medicaid was contracted out to private insurance, and that would be a very good thing. He did not elaborate why, and I didn’t think it wise to keep pressing him.

a sampling of privatized Medicare logos

 A few minutes later, as I was reviewing charts for the morning, one of the attendings in the presenter’s own department (and an attending that I had worked with!) came to the exam room I was working in and told me he thought the presenter should have included some information about Medicare Advantage (the version of Medicare that’s contracted to private insurance companies) to the presentation. He said it was proven that Medicare Advantage cost more than traditional Medicare and didn’t have any proven better outcomes, which is true. He then gestured around and said “For all the imperfections of a single payer system, it’s what we need.” Comrades! Sometimes taking a tiny risk and speaking out helps people reach out to you. I just wish he had given the Grand Rounds.

It bears mentioning how harmful it is to present biased and only partially accurate but incomplete information to groups of physicians. A senior attending is a trusted source of material, and doctors are often too busy to do primary research about every issue. Grand Rounds exists to educate with facts, not half-truths. It was an informative and well-researched presentation in many ways that happened to conveniently neglect some key data.

 When reading info about the superiority of single payer over existing systems, I am often struck by how obvious of a solution it becomes from all angles – reduction in bureaucracy, centralization of records, marketing power to bring down pharmaceutical and medical device costs, thus providing incentive for pharmaceutical companies to develop truly innovative drugs instead of  “me-too” substitutions that are guaranteed to make money, just to name a few. And when one simply steps back, how much sense could it ever make to rely on companies whose main goal is to produce profit for shareholders to reduce healthcare costs? It’s a fundamental conflict of interest. Yet, in the face of presentations like today which I’m sure are a common occurrence, physicians are given biased views and told about the bloated, complicated Medicaid system that covers millions of US citizens and costs taxpayers billions of dollars (with a special emphasis on the low provider reimbursement rates) without explaining how much more inefficient and wasteful private insurance is.

We have much work ahead of us and much misinformation to put to rest, but every day the road becomes a little clearer and the facts speak more loudly for themselves.

On serving the Underserved as an incredibly privileged person

Prior to starting medical school, I was a research assistant in a pilot program, a multi-disciplinary assessment of community reintegration in people diagnosed with HIV and recently released from incarceration. My job was to conduct detailed psychological interviews and perform neuropsychological testing in order to establish history of trauma, previous psychiatric and psychological treatment, and any cognitive challenges patients faced. I had expected the project to be challenging, but I had not anticipated the depth of my own emotional reaction. This project would set in motion my understanding and subsequent commitment to social justice. It would highlight the necessity of responding to suffering, which includes not only caring for individuals but also combating systemic barriers to health and human flourishing.

My patients felt they had paid their debt to society, but society would not give them a chance. Most had limited education and job training, and during the recession, it was difficult enough to find a new job without a conviction. Prior to incarceration, many had suffered mental illness, including substance addiction and depression. All of them now faced complicated HIV medication regimens and doctors’ appointments despite frequently unstable housing, transportation, and employment status. After release, many met criteria for devastating post-traumatic stress disorder, some resulting from horrifying events occurring while under the “care” of the State. Almost all were from poor backgrounds and the majority were people of color. During the interviews, many expressed themes of detachment, a sense of alienation from society starting in childhood. Some intimated a sense that outcomes many Americans view as basic rights or inevitabilities were never options for them, like freedom from an abuser, a safe home and school environment, or deciding what to be when they grew up.   

How do we interpret and respond to another person’s experience outside of our own perspective? When we consider the background of ourselves and our peers, perhaps even the process of becoming a health professional could be a hindrance to meeting the needs of the Underserved. Consider: to even become a doctor almost demands that we are from a background where adults took time to read to us, encouraged our intellectual development, loved us, and met our needs. Without emotional and financial support and some degree of stability, it would be impossible to achieve the sustained academic excellence required to even gain acceptance to medical school. We are told that we are here because of merit, when the reality is far more complicated.

We are taught to feel negatively toward those who have committed crimes, yet most of us do not understand the complex criminal justice system, including how we decide what a “crime” is and is not, how we determine its punishment, and how incarceration affects not only the individual’s psychological and physical health, but that of their families, their friends, and our entire society. People don’t commit crimes in isolation of social influences. The medically Underserved do not exist in a vacuum of poor decisions and bad luck.

What if our way of life has necessitated an underclass, and all attempts to attend to their medical needs are stopgap measures?  

For me, the process of dedication to attending to the needs of the Underserved has been continuous and ongoing, requiring learning and re-learning, questioning, research, and learning about the history of my own privilege. My work with individuals has informed understanding of the effects of a profit-oriented medical system that is incentivized to treat disease instead of promote health. This is in the context of a short-sighted economic and political environment that values the accumulation of capital and wealth to such an extent that even its pursuit is an act of violence against the poor.

On an immediate level, meeting needs of the Underserved involves helping individual patients develop self-efficacy while also helping people learn to meet challenges as a community. These are skills that must be promoted in medical and other health professional schools; it is much easier to tell patients what they need to do than it is to figure out why they aren’t already doing it, especially in a time where patients will often come in having googled symptoms, diagnoses, and treatment options. As healthcare professionals, we must unravel the previous paternalistic view of physician-as-expert. We are partners in promotion of the health of our patient, who visit us in recognition of the training we have undergone to provide medical knowledge and perform procedures as safely as possible, free from the influence of those who simply view the provision of healthcare as a commodity to be bought and sold.

Some illnesses and treatments are so well-established there is an actual algorithm for what medications to prescribe. Diagnosing and treating high blood pressure comes to mind. While there is still a need for a careful history and physical exam to rule out other causes, many people could read the JNC-7 report and figure out what blood pressure medication they should be taking. Some have criticized that our move to evidence-based medicine instead of intuition, prior practice,  and “expert”-based medicine has taken the human element out of care. A recent study provided some evidence that artificial intelligence can apply treatment rules better than doctors and with better outcomes! What will be the role of medicine as these technologies are further developed? Will there even be one? I think there will be; human behavior is much more complicated than knowing what one should do and simply doing it. I am interested in how contributions from the fields of positive psychology (the study of human flourishing) and behavioral economics (the study of how people make choices) may inform the practice of medicine.  The human element of the patient-physician relationship provides room for encouragement, some accountability and motivation, and identifying other barriers the patient may not have considered. To be a good physician requires training developing these skills. Yet it is not the primary focus of current medical training, which overemphasizes memorization of scientific facts. Knowing the specific enzymes and substrates in the cholesterol synthesis pathway may help us understand how cholesterol-lowering medications work, but choosing a medication for a particular patient is often based less on how it works, but more on how well it works and its side-effect profile.

On a broader level, helping the Underserved demands recognition that all people’s struggles are related. It requires the development of an empathic mindset starting in childhood.Maybe it means that terms like “Underserved” are themselves divisive and kind of perpetuate themselves without solving the problem.

When it becomes especially challenging and seems overwhelming to address all injustices, it might be helpful to try doing something like a silent prayer: May we be able to recognize the common vulnerability to disease, suffering, death that all people share.

 

Role of Profit in Virginia’s Medicaid Expansion Drama

Since I last wrote about Virginia’s foot-dragging on expanding Medicaid back at the beginning of January, a number of interesting developments have taken place. Fortunately, after what can only be described as a beating with evidence, public outrage, politicking, manipulation, and extreme waste of resources, it looks like Virginia is starting to consider accepting the expansion of Medicaid and joining the ranks of such progressive states as oh, Florida.

There is a back story to why this is happening now, and why Virginia’s uber-conservatives are allowing it at all. It involves the opportunity to profit. To understand why, let’s go through a quick summary of the events of the past couple months.

When the House of Delegates and Senate worked on their budget bills, the House agreed to accept Medicaid funding only if Virginia could have authority to “reform” Medicaid, and only after a likely special session meeting. The Senate bill was slightly less strict, saying Medicaid expansion would happen without approval from the General Assembly, but that “reforms” were still necessary.

Earlier this week, McDonnell really gave us a good scare by implying that no matter what kind of reforms Washington allows Virginia to make, it was unlikely Medicaid would be expanded. He wrote a letter to the chairmen of the House and Senate budget committee on Wednesdays, including the following, “Please understand that I cannot and will not support consideration of an expansion of Medicaid in Virginia until major reforms are authorized and completed, and until we receive guarantees that the federal government’s promises to the states can be kept without increasing the immoral national debt.”  It’s worth noting that McDonnell vehemently opposed cuts to the national “defense” budget, yet the US spends, as this article very nicely elaborates, “nearly as much on military as the rest of the world combined.”

Virginia’s Democrats in the House, seeming to recognize how ridiculous this was all starting to get, started to talk about blocking the Transportation Bill if the Medicaid expansion didn’t happen*. So, yesterday, the Senate and House voted to, uh, if not exactly accept federal money and expand Medicaid, then to pave the way towards accepting it in July with the stipulation that there be major reforms to the way Medicaid is handled in Virginia. Completely and utterly confusing, I know. This article in the Richmond Times-Dispatch reported, “The budget actions give a green light to negotiations already under way between state and federal officials on flexibility in how Medicaid is administered in Virginia — from the benefits that would be provided to newly eligible participants and their share of the costs, to the eventual use of managed care for all Medicaid services to control costs.”

Aha! Virginia wants to have more flexibility to use managed care for Medicaid. Read this as : Virginia wants to contract out the administration of Medicaid to private companies, like in Florida. They want reassurance that the federal government will allow this. With Florida setting precedent earlier in the week to move forward with increased privatization of Medicaid, Virginia was able to breathe a little sigh of relief. We might get the government out of our Medicaid after all! Florida state representative Mark Pafford remarked, “Whenever you inject the profit motive into medical decision-making, there’s a tension between patients’ interests and stockholders’ interests…We haven’t seen any hard evidence that privatizing Medicaid will actually help people.” Well said. So why is the federal government allowing this?? Well, it’s giving lip service to critics like Pafford, saying that Florida has 3 years to prove that privatization provides effective coverage and keeps costs down. On Wednesday, when Florida Gov. Rick Scott announced Florida would be expanding Medicaid, he stated, “Quality healthcare services must be accessible and affordable for all, not just those in certain zip codes or tax brackets.” It’s interesting how quickly Republican governors take up the language of real health reform advocates when the opportunity presents itself to make a profit off Medicaid.

It is well-documented how privately administered Medicare Advantage programs increase costs to taxpayers and lower quality of health services delivered. These programs have wasted $283 billion dollars in taxpayer money from 1985-2012. It’s a complicated story, but just one of the ways this happened is because the programs select for the healthiest seniors, leaving the sickest, poorest, and most expensive seniors to the standard Medicare program. Private corporations that administer these programs go home with a profit; American taxpayers literally get sold out.

The always-eloquent health justice activist, pediatrician, and role-model Dr. Margaret Flowers put it best in 2011 when she wrote about privatization of publicly-funded healthcare. “Medicare and Medicaid must be left out of the discussion entirely until leadership has the courage to address the real reasons why our health care costs are rising, the toxic environment created by investor owned insurances and the profit-driven health care industry.”

*Transportation funding plans in Virginia are particularly near and dear to my heart as there was serious discussion about re-adding a toll to I-95 South effectively throwing poor, rural southern Virginia – where I am originally from – under the bus. Making the poorer areas of the state subsidize the wealthier parts is NEVER a good idea. Ultimately this didn’t make it into the transportation bill, fortunately, but it bears mention that it was McDonnell’s idea, and given his high-falutin’ talk about “morality,” it’s interesting how selectively morality can be applied.

The Drug Rep

Drug reps. You always hear about them, but as a med student you don’t often get a chance to interact with them. This is because they don’t care about you – you can’t prescribe drugs yet! (Also related to my school’s policy regarding them.) I’ve been on my family medicine rotation in a private practice outside of Richmond, and for the first time I’ve really gotten the opportunity to see exactly how they function. A few days ago a friendly, well-dressed attractive woman came in to see the doctor I was working with that day. She said she wanted to follow-up on how patients were doing after the doctor started them on a new diabetes drug her company was marketing. The doctor introduced me to her, and she started to tell me about the drug as well. Apparently the main benefit over other similar drugs made by competitors is that this drug is minimally excreted through the kidney, thus making it a good choice in patients with co-existing kidney disease. It is true that kidney disease often accompanies diabetes, so I could see how this could be a benefit. Yet how important of a contribution to diabetes treatment is this drug really? Without going into too much detail, it’s one of a class of drugs that acts to increase a substance normally found in the body that acts to increase insulin release and decrease glucagon release, leading to lower blood glucose levels (which is the big problem in diabetes). All of the drugs in this class are relatively new (and extremely expensive), so there are no long-term data on the safety. Overall they appear pretty safe (although have been linked to pancreatitis in some people), and don’t seem to cause dangerously low blood sugar like some older diabetes drugs. Unfortunately, they just don’t really work very well, measured by %hemoglobin A1C levels which are used to estimate average blood glucose levels over the past 3 months. It would be difficult to make an argument to start with them instead of a tried-and-true drug like metformin, which is the first-line, much cheaper drug to treat type 2 diabetes.

Well, that type of thing is all interesting and plays into bigger conversations about the incentives for new drug development, including truly novel drugs to treat important diseases like diabetes. But I was more interested in finding out how this drug rep viewed her role in medicine and what she thought about the industry she was working in. I asked her about the Avanda fiasco. Briefly, GlaxoSmithKline, the maker of Avandia, recently pled guilty to intentionally suppressing information that the top-selling diabetes drug  increased risk of heart attacks and continuing to market it as safe. This was always a controversial link because diabetes itself is a huge risk factor for heart attacks. Now, I can’t speak to quality of all the complex data analysis that went into teasing out how many heart attacks were due to use of the drug and how many would have happened anyway, but it has become pretty clear that GlaxoSmithKline did hide information when there was cause for concern.

So, what did she think about it? She told me that her company was viewing it as an opportunity because there was now a gap in the market with one less diabetes drug. She also said she had spoken with people who were familiar with the types of data analysis and the risk of heart attack was overblown as a scare tactic in the media. And what if, I asked, it was later determined that her company had suppressed information about the safety of the drug she was promoting? What if it turned out it had a terrible side effect? How would she feel? She artfully dodged the question and attempted to side with me, “I’m a skeptic too! I like to see the data! And the data in these trials shows that this is a safe drug and a good option for patients with diabetes and kidney disease!”

Then the doctor I was working with returned. One of the realities of 3rd year is that grading is very subjective, and I don’t want to seem like an argumentative person who is difficult to get along with, so I gave up on the questioning. The doctor is way more important to talk to anyway, and she quickly turned her attention to asking about his family and some interests that they shared.

To a certain extent, each physician practice setting can develop its own rules as to how it will deal with drug reps, and a considerable amount of attention has been brought to the issue of salespeople influencing physician prescribing habits. The influence of Big Pharma is wide-reaching and often one step ahead of public information and policy-making. Indeed, one has to appreciate the ingenuity of approaches Pharma has taken in order to butter up physicians.

The common denominator of these approaches involves exploiting that most doctors think of themselves as pretty smart people. As a result, most doctors think they’re immune to the tricks of salespeople and resist the idea that they would alter their drug-prescribing habits based on talking to a salesperson or even getting to know them. This isn’t the case. In fact, physicians may be in a particularly dangerous and even vulnerable situation. Medical school is hard, and there is considerable emphasis given to the importance of development of critical thinking and analytical skills in classes. It’s pretty difficult to know how well those analytical skills have sunk in or remained over the years, as most of the national medical licensing exams are multiple choice (there is at least one national required test where you’re evaluated by seeing patients). What is probably more important is that in medical school we are taught to believe that we HAVE developed these skills and are thus less susceptible to influence by outside sources.

Thinking of oneself as intelligent is not something I’m faulting doctors for – everyone, of course, wants to feel this way! Doctors deserve to be respected for dedicating a substantial part of the prime of their lives to learning an enormous amount of information in order to be able to relieve some suffering one day. I honestly believe most people go into medicine because they are interested in the subject matter and want to provide a valuable service to humanity. Drug reps know this, and take great pains to emphasize how the drug is better for the patients and how smart they think the doctors are. They give them glossy information packets about new medications that include copies of relevant research studies (as if a busy doctor in private practice is going to actually not only read every study handed to them by a rep, but critically evaluate strengths and weaknesses!) They give samples of the medication to the office, which seems to me to have the undertone of emphasizing they are trying to make expensive medications available to patients who otherwise wouldn’t be able to afford them, playing on most doctors’ tendencies towards altruism. Unfortunately, when the samples run out, the patient is still taking an expensive brand-name drug and may prefer it because it’s what they’re used to.

Another way drug reps appeal to doctors’ desires to think of themselves as pretty smart folks is asking them to be a (paid) speaker, calling them things like “thought leaders.” They’re supposed to give talks to other doctors about the condition the drug is for and the side effects and advantages of the drug. They view themselves as providing a good service to other doctors and their patients. In reality, something about the psychological effect of getting paid by the company actually influences the prescription writing of the doctors (who were only approached as a “thought leader” because they already wrote a lot of prescriptions for the drug!) It may be that they have to justify it to themselves to prevent cognitive dissonance of speaking for something they don’t truly believe in.

So how can doctors protect themselves from this type of coercion? One very simple way seems to be to refuse to meet with drug reps and rely on obtaining information about new treatments through other, less biased sources. In reality, every source has a bias, but it seems hard to imagine a less objective source than a person whose very career depends on convincing people of the superiority of their product.

In 2013, every doctor that takes money from drug companies will be available to the public. Here’s a database in the meantime. And here’s the website  of No Free Lunch, an organization that’s dedicated to making sure that patient care isn’t dominated by the coercion of drug companies. They have their work cut out for them.