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

 

 

 

 

SCOTUS shows us we need to take a BIG step back

Let’s say you are a smart high school student who is learning about the American healthcare system for the first time in a civics/social studies class and considers herself unbiased, non-partisan, and open to a variety of perspectives and solutions. You are given an assignment to read this article about how we aren’t getting what we pay for in healthcare – we have the most expensive healthcare system in the world, yet we aren’t any healthier than other developed countries.  You learn about the ACA and all the workarounds that have been implemented in its wake (voluntary Medicaid expansion for states, for example) and finally, today’s Supreme Court decision. That a private corporation that provides health insurance to its workers is exempt from having to provide coverage for birth control – a basic preventive form of health care that allows women to decide when/if to start families, even though birth control is included in the required forms of mandatory minimum coverage.

Would you look at this law and think:

A: “Wow, glad that’s settled. No one will ever challenge the ACA again and this is a great example of religious freedom in America.

B: “This system just allowed a small group of people exemption from the law because these people held an opinion that other people that they have power over (ie., their employees) shouldn’t do something (in this case, take a medication) that they disagreed with.”

It doesn’t take too much imagination to think that this is just one of the many future battles to be waged on the ACA. Because special interests (ie., certain employers) are still intimately involved in seeing that a good deal of the public has access to healthcare thanks to the ACA, the implication is that our system is going to get more and more complicated, exemptions for special groups will continue to be made, and as a result, the public will NOT have the expanded access to affordable, comprehensive healthcare the ACA was (supposedly) designed to promote.

If I were that high school student, I would say – scrap the whole thing and start over.

I would want a system that provided certain mandatory minimum coverages to ALL people, regardless of their bosses’ religious and political inclinations. I would want a system that didn’t jeopardize my ability to plan a family because of my employers’ convictions.

When we have these arguments about whether certain groups should be exempt from certain parts of the law, we are getting mired down in details and missing the bigger picture – that we have “designed” a bizarre and perverse system that has now incentivized employers to take such interest in our sex lives that the SUPREME COURT has to get involved.

A solution – get rid of employer-sponsored health insurance and extend Medicare (with mandatory minimum coverage requirements!) to everyone.

 

Good article about some more philosophical considerations…

Income Inequality is Everyone’s Problem – Including Physicians

A group of medical students (myself included!) rally to support Single Payer – one of the most important campaigns health professionals can participate in to combat income inequality.

The publication of Thomas Piketty’s book Capital in the Twenty First Century has really shook the economics community, and along with Robert Reich’s documentary Inequality For All has thrust the debate about income inequality into the spotlight. I haven’t yet read it, but it’s hard to ignore all of the publicity it’s been getting from highly influential people. Bill Moyer’s interview with Paul Krugman as he discusses the book and its importance is well worth a watch. As I understand it, the thesis of the book can be summed up in the Intro (available to preview for free on Amazon!),

When the rate of return on capital exceeds the rate of growth of output and income, as it did in the nineteenth century and seems quite likely to do again in the twenty-first, capitalism automatically generates arbitrary and unsustainable inequalities that radically undermine the meritocratic values on which democratic societies are based. There are nevertheless ways democracy can regain control over capitalism and ensure that the general interest takes precedence over private interests, while preserving economic openness and avoiding protectionist and nationalist reactions.

 

I don’t think this book could have come at a more important time. With the following egregious facts coming to light (CEOs now making 354 times the amount of the average worker), nicely summed up by John Case’s article for People’s World:

The wealth of the 1 percent, and even more the .1 percent, is increasing at 2-3 times the overall growth rate of the economy (GDP). The median income worker, on the other hand, received virtually no gains from increased productivity. And workers who fall below median income have seen their share of national wealth and income dramatically cut.

It seems that Americans are more open to realizing that the super-rich didn’t necessarily do anything of value to earn that money, and that it is harmful for everyone for wealth (and increasingly, political power) to be concentrated in the hands of fewer and fewer.

As a member of the Millennial generation, I grew up being told I could be anything I wanted to be. Inherent in that statement is the idea of upward mobility. The idea that working hard is a surefire way to success in America. Yet, increasingly, this is a myth, and reviews of this book indicate this is something that Piketty addresses. In a review by Christopher Matthews for CNNMoney, he writes,

[Joseph] Stiglitz was equally taken by the work, arguing that Americans would not be bothered by increased inequality if it were based on merit within a society that enables class mobility. But the U.S. is near the bottom when it comes to social mobility [emphasis added].

 

Now we see a student debt crisis and the related social and economic effects of this on our generation, yet we are blamed for being lazy and entitled when we can’t find meaningful work that allows us to support ourselves as well as generate new ideas and technology.

Why should physicians care?

• Medical students are a privileged few who have managed with a hearty dose of luck and generous social support to forge the beginnings of meaningful careers, but we face financial and occupational insecurity never before faced by the profession.  According to the AMA,

AAMC data show that median private medical school tuition and fees increased by 50 percent (in real dollars) in the 20 years between 1984 and 2004. Median public medical school tuition and fees increased by 133 percent over the same time period. 

 

• Accelerating consolidation of hospitals and insurance corporations, leading to huge behemoths of systems with unprecedented power and exploding costs. The ACA has been a driver of this trend, and this is a HUGE topic that’s worthy of much closer examination that I only superficially address here. Yet there is no doubt this relates to concentrations of influence.

• Concurrently, physicians are changing from an employing to an employed class. This is also related to many other factors, such as the fact that employed physicians typically have more predictable work hours, a guaranteed salary, and maybe a better work-life balance. But, because they are employees, they have a boss that they are accountable to, who may or may not possess an MD and understand the challenges of the profession. Will this mean that doctors’ voices will be less influential in healthcare in the future? In a 2014 Medscape survey asking what doctors dislike about being employees, 45% of employed doctors reported limited influence in decision-making, and 30% reported “being ‘bossed around’ by management. If this doesn’t sound like the classic worker-boss struggle… Yet as a “profession” instead of a “trade,” doctors generally do not participate in typical collective bargaining efforts like strikes (and many, including myself, have ethical concerns with doctors striking).

To me, the direction this is pointing is that physicians no longer have the power and influence they once did, and they will likely continue to experience declines. I don’t think this is entirely a horrible thing in itself; like all groups, physician self-interest has not always aligned with what’s best for the public (ie., the AMA was one of the biggest opponents of Medicare for all back in the day, and its official position does not support single payer still.)

This change in status will force physicians to pay attention to the concerns of the working class – because physicians now belong to it. 

Our organizing strategies will have to reflect this emerging reality. The good news is that tons of groundwork of labor movements has already been laid. Once physicians join the voices of other allied health professionals and working people, all of our voices will be much stronger. This means physicians must publicly support the struggles of much lower-income workers in living wage campaigns (as these health professional students did, this physician did, and this group of physicians did), attempts at better working conditions, and yes, single payer healthcare.

• Finally, and probably most importantly, physicians should care about income inequality because it drastically affects the health of our patients. Check out these graphs charting life expectancy by income.

If true democracy is the key to solving the problem of income inequality, physicians can play an integral role. Now, more than ever, we’re in this together.

Anyone Can Serve

I don’t think I’m alone in occasionally feeling discouraged in my ability, as an individual, to make some positive change in the face of powerful corporate interests. A few recent events have allowed me to reflect on this feeling and given me some guidance in how to proceed.

The first was a recent lobby day organized by some very inspiring, intelligent, and thoughtful first and second year med students at my school. It was organized by VCU‘s chapters of Physicians for a National Health Program (PNHP) and American Medical Student Association (AMSA), with some help from National Physicians Alliance. The goal was to advocate for closing the coverage gap in Virginia – expanding Medicaid. They set up appointments for us with some extremely difficult targets, so I knew it had the potential to be tougher than some other lobby days I’d participated in. Having grown up in the South, I wasn’t surprised at the undertones of sexism and condescension (ie., referring to adult, professional women as “honey” and “girls,” etc.) I even expected the ideological arguments grounded not in published research or testimony from health policy experts, but in pure opinion. Del. Orrock, an otherwise friendly, likable man who probably is great at his job as a high school ag teacher (bet you don’t have those up North!) remarked that he wouldn’t support Medicaid expansion because the program didn’t adequately ensure “personal responsibility” in enrollees. Never mind the economic arguments (Virginia is losing $5 million dollars a day for a projected total of $2.8 billion), the health outcomes arguments (over 7,100 deaths attributable to consequences of no healthcare access), or the fact that Medicaid expansion is primarily targeted toward people who aren’t (obviously) already covered by Medicaid – mostly the working poor. I tried emphasizing that I have seen many patients with illnesses that aren’t a result of lifestyle, and that we are all vulnerable to disease and death. The idea that people don’t value health care because it’s free and visit the doctor – what, for fun? – on a whim is not really even worth entertaining as a serious reason to inform public policy. I wonder whether people even believe that, or if they just latched onto that idea as a way to resolve their cognitive dissonance about how doing the morally and economic right thing would jeopardize their position as a Republican legislator. Then there was the meeting with Del. O’Bannon, a member of the Medicaid Innovation and Reform Commission (MIRC), the group currently charged with making the decision to expand Medicaid. He also refused to support this expansion without “significant reforms” though didn’t specify what, exactly, those reforms would be. It was a tiresome meeting. 

We did meet a well-dressed, attractive young woman who answered some of our questions about the general assembly process though – she was a lobbyist for Pfizer.

One thoughtful grad student in another profession remarked when I described my lobby day experience to her that it can be useful to talk to representatives just to remind us that there isn’t but so much that can be accomplished inside of the system. It’s true – I was pleasant but serious, balanced listening with speaking, and did all of the “right” things during the lobby day, but I’m not sure how much difference it made. It is very useful for these representatives to know that future physicians are paying attention and educating themselves on these issues; it’s clear we care deeply. But that may be more of a long-term strategy. Using a variety of tactics to accomplish change is something that I continue to grow increasingly respectful of.

The second is my participation in an elective at my school that is designed to introduce students to the workings of a large health insurance corporation (I won’t mention which one it is, but it’s probably not too difficult to figure out.) I signed a non-disclosure agreement to not report their proprietary information, and I won’t do a huge med student expose on my experiences because a) I don’t want to jeopardize the chances of them not offering the elective for other med students and b) my integrity is very important to me – I said I wouldn’t reveal specifics in exchange for the incredible opportunity to spend time learning what goes on there (or more likely, how they present what goes on there), and I won’t do it. So, very generally, I will say that it is difficult to envision disengaging our health care system from these huge, entangled webs of companies that offer very little value outside of what is being accomplished already by CMS. That isn’t to say the employees aren’t talented, thoughtful people who have much to offer to society – and who could easily offer it in the public sector instead. Very often when meeting with them I feel extremely sad that such bright people are being used by the company for the ultimate aim of keeping them ahead of their competitors. If this results in great patient care, that’s wonderful, but if not, money is what matters. Publicly-traded for-profit companies have but one obligation – to increase the wealth of their shareholders.

One common misconception about those who seek to limit the overreaching powers of corporations – It’s not that these companies can NEVER benefit society, it’s just that in instances when benefiting society conflicts with making money, the bottom line always wins.

I’m currently working on a review article about the impact of cost-sharing (deductibles, copays, etc) on low-income Americans, ie., the people targeted via Medicaid expansion. Getting acclimated with the literature in this area has been a combination of frustrating and inspiring. On the one hand, there’s so much clear evidence that imposing extra costs on poor people doesn’t improve their health or save money that it’s unbelievable there is still so much support for these types of policies. On the other hand, it’s incredibly inspiring to read about the brave actions that researchers have taken in conservative states. Some people have really aligned themselves with the poor, putting their reputations and careers on the line. They’re not really famous, they don’t have movies coming out, they’re not on “The Doctors” or anything like that, but they are worthy of recognition and admiration.

A few examples:

Gordon Bonnyman: A lawyer and advocate of Tenncare, an innovative and controversial experiment in Tennessee that aimed for universal coverage. It ultimately failed due to budget cutbacks and a variety of other reasons.

Teresa Coughlin: A senior fellow at the Urban Institute. Among many other things, she conducted research about how well Florida Medicaid recipients understood the extremely complicated reforms that occurred in 2006 under the premise of increasing choice and benefit variation and providing incentives for healthy behaviors (personally, the only thing I’m confident I understand about Florida Medicaid reform is that it involved a lot of paperwork). She and her colleagues demonstrated that, unsurprisingly, people had great difficulty understand the details of the plans, or even knowing that they were enrolled in the plans.

One of the core issues in assessing consumer-choice models is the degree to which individuals have the ability to make informed choices among different plans, which is central to the success of a competitive model. Informed choice presumes that key information on enrolling in and using a plan are communicated in a way that is easily accessible. It also presumes that sound plan information (for example, information on provider networks and prescription drug formularies) is readily available. Equally important, people must be able to use the information to make the complicated decisions required to ensure that they select a plan that meets their needs and preferences. Previous studies, however, indicate that understanding and acting on health care information is a problem for nearly half of the general population. Making sound decisions may be an even greater challenge for Medicaid populations, as research indicates that advanced age, limited formal education, and poor health status—characteristics common among program recipients—are associated with poorer health literacy.

Robert Reich: Ok, this guy is famous, and he DOES have his own movie (check it out – it’s great!) But take a look at this facebook status he posted today:

Behind the political theater over Obamacare – from the botched rollout to yesterday’s false claim it will increase unemployment – is a reality that’s barely mentioned, not well understood, but the most important of all: It’s leading to the biggest consolidation of insurers and health providers in history. Giant insurers like WellPoint are taking on an ever-greater share of enrollees, hospitals are merging into huge systems, and physicians are fast becoming system employees. Last year alone 247 hospitals merged, three times as many as in 2008. A decade ago, hospitals owned a quarter of all physician practices; by 2011 they owned half. Why? Because large insurers and giant hospital systems are each racing to increase economies of scale and market power over the other — in order to capture more of the revenues from the Affordable Care Act as well as an expanded Medicaid and, not the least, the surge in baby-boomer Medicare.

The endgame here is either (1) huge healthcare monopolies that rake in tens of billions of dollars a year while delivering mediocre services, or (2) a single-payer system with regulated prices that turn on healthy outcomes. I predict (2), within the next decade. Which do you predict?

It’s these people that remind me that we are in class war, for lack of a less divisive term, and it’s composed of everyday, local battles. We can’t fight them all, but we can choose an aspect of to gain expertise in. We can support each other through diverse causes, recognizing that many struggles fall under the same umbrella. And eventually, I still think, we will succeed in holding the flood gates against special interests and will be able to forge a more just society.

Expanding Medicaid is important; keeping an eye on Managed Care corporations is more so

It’s no secret that the ACA is experiencing growing pains at best and is in crisis at worst. Plagued by website concerns and the fact that many states are not committed to the Medicaid expansion, actually manifesting the increased coverage that is so central to the bill is proving to be much more difficult. Robert Reich recently remarked on his Facebook page regarding the problems with ACA implementation, “…if the problems continue, it won’t be only Democrats in trouble but the entire idea that government can do something complex and well. Yet, ironically, it won’t be the government that determines whether or not the system works as promised; it will be an array of private for-profit contractors and insurers.”

Again we see private industry creating problems but our government taking the blame in the public’s eye.

SCOTUS’ decision to allow states to choose whether to expand Medicaid created a new “donut hole” that’s particularly worrisome – people who do not qualify for Medicaid as it currently stands, but who make less than 138% of the poverty line (and thus do not qualify for the federal subsidies to purchase insurance through the exchange) have absolutely no options for health insurance! Because they were supposed to be covered under the new expanded Medicaid, no other provisions for their coverage were made.

It is extremely important that Medicaid expansion happen in every state, but we need to keep a close eye on how it’s done.

In some previous posts I’ve talked about states’ ideas for implementing Medicaid expansion and how Virginia, like many other states, seems to be leaning in the direction of increasing managed care. This basically amounts to awarding contracts to private insurance companies to handle the administration of Medicaid, with the idea that private companies will know how to better decrease costs as well as increase efficiency. Generally (but not always) this means that private companies are paid a fixed rate per enrollee, which is usually a percentage (usually around 95%) of what patients are costing the state, on average, under the prior fee for service system. Good data exists regarding this tactic in Medicare. Contracting to private companies via Medicare Advantage increases costs because programs have consistently found ways to cherry-pick for the healthiest seniors, thus minimizing risks, and have higher administrative costs than traditional Medicare.  It is estimated that Medicare private plans have resulted in overpayments of over a quarter-trillion dollars from 1985 – 2012!

However, the impact of Medicaid Managed Care on cost, access, and quality of care is more difficult to assess on a national level because Medicaid is a state program and significant variability exists between states. The patient population of Medicaid is also significantly different than Medicare. Yet there is some emerging evidence that the impact is negative, especially when for-profit companies handle care:

1) A recent study by McCue and Bailit directly compared publicly-traded with non-publicly traded Medicaid Managed Care plans and found “publicly traded plans that focused primarily on Medicaid enrollees paid out the lowest percentage of their Medicaid premium revenues in medical expenses and reported the highest percentage in administrative expenses across different types of health plans. The publicly traded plans also received lower scores for quality-of care measures related to preventive care, treatment of chronic conditions, members’ access to care, and customer service.”

2) The state of Connecticut recently ended their contracts with multiple managed care organizations (MCOs) after an independent investigation, citing concerns about insufficient transparency regarding allocation of funds and burgeoning administrative costs.

I spoke with a few physicians who provide care to a large population of patients with Medicaid about differences they’ve noticed with the Managed Care companies vs fee for service. These companies seem to increase administrative burden on physicians by ensuring “quality measures” are met. A few examples – reminders to place patients on ACE inhibitors (when many of the patients are already on these medications, but just not registered by the company), or “Members who turned 15 months old during measurement year and had at least 6 well child visits since birth.” While important aspects to consider, it’s easy to see how satisfying them may not necessarily lead to better outcomes (but give the appearance of such to policymakers). It’s even easier to see how these may balloon into huge administrative bloat for already busy doctors.

Still, many states are expected to increase their involvement with private insurance companies in expanding Medicaid.  Why? The myth persists that private companies, because they are subject to the invisible hand, will streamline administrative costs and improve quality or risk failure. All available evidence points to the contrary, because healthcare does not function like other markets. 

 

Medicaid Managed Care proponents say that coordinating care of people with chronic diseases/conditions is necessary to help them navigate the confusing system and keep them out of the hospital living longer, healthier lives. How could any multi-payer system possibly do that better, and with less administrative burden, than a single payer one? That would allow for the optimum, most efficient coordination of care, as well as quality evaluation.

Let’s work to keep an eye on further privatization of Medicaid. An example of an organization doing just this is Community Catalyst, a consumer advocacy group that conducts research and writes publications about healthcare reform, including Medicaid Managed Care. 

When these market-based experiments fail, we need advocates to step in swiftly with evidence-based explanations in order to prevent the needless suffering of patients and further waste of taxpayer money.

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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Price-posting: Oh Look! Another Healthcare Cost “Solution” Gimmick.

The Surgery Center of Oklahoma has been in the spotlight recently because of its decision to post all of its prices for its procedures online. This has been heralded as increasing transparency in healthcare costs and implicitly demonizes other hospitals in the area that haven’t followed suit, like traditional academic centers.

Why haven’t hospitals done this a long time ago, so the uninsured can bargain shop for their knee replacement  instead of being stuck with a huge bill they’ll have to go into bankruptcy to afford? It’s an attractive idea, especially when presented as oversimplified as it has been to the public.

In isolation, price-posting is just another market-based artifice, more zeitgeist of our accelerating entrenchment in our broken, healthcare-as-commodity model than any real solution. Nothing illustrates it better than this quote in the NYT opinion piece from the co-founder of the Surgery Center himself, “Patients are holding plane tickets to Oklahoma City and printing out our prices, and leveraging better deals in their local markets.”

HOLD UP DOC. There are a few BIG assumptions here:

1) The medical procedure you need is known to you in advance – that is, it isn’t an emergency.

2) You have the ability to pay SOMETHING ,but either don’t have insurance or lack specific coverage for the procedure, etc.

3) You are physically and mentally able to bargain shop for the healthcare you need. There are many people who need healthcare services who aren’t able to do this – people with dementia requiring long-term care, a person in a coma from a car accident, a person with a debilitating psychiatric problem – it’s not hard to bring examples to mind.

We find that what this really represents is a very specific marketing tactic to a targeted audience – mostly healthy people who need an elective surgery to improve their quality of life. Clearly a very important demographic, but it by no means representative of everyone seeking healthcare.

This approach might works for certain places, like outpatient surgery centers, because they don’t have to deal with people who can’t pay. They can throw their hands up and say, “Don’t blame us! This is a fair deal. Our prices are listed with no small print – pay or don’t receive services.” These are not hospitals – they are centers that offer specific, non-comprehensive services.

Meanwhile, other hospitals in the area, like Oklahoma University Medical Center, take care of people who can’t pay.

The NYT opinion piece basically sums the problem of healthcare costs as a lack of knowledge on the part of the consumer.  That IS a problem, but the real problem is summed up simply in one word: profit.

When there is a market-based healthcare system like there is now, we get comical (but tragic!) comparisons like the NYT piece where finding cheap airline tickets through Kayak is used as analogy to “shopping” for health care.

Anyone without a stake in the current system, any American that needs life-saving services, anyone with the presence of mind to take a step back and examine things in context will see this is just. another. tired. gimmick.

The beginning of a real solution to the healthcare cost problem requires the following steps, in order:

1) Recognize every single person’s fundamental vulnerability to disease and death.

THEN

2) Affirm healthcare as a human right, NOT a commodity that is only available to those that can afford it.

THEN

3) Change the system into an “Ultimate Public Utility” model – because it’s something that we ALL benefit from, and are (mostly) unable to predict when we will require.

THEN

4) Realize that a publicly-funded, Single Payer model – improved Medicare for everyone – is the NECESSARY BUT NOT SUFFICIENT next step.

I’ve noticed some Single Payer advocates start to falter when they present Single Payer as the ipso facto solution for every healthcare-related problem. It will not be like that. Very little will change for the average person if we just decide tomorrow to extend Medicare to cover everyone. A Single Payer system’s REAL power is providing the  ONLY framework that will allow us to collate our bloated, fragmented system into one that can be examined and systematically changed in response to population needs. More fundamentally, it is the only one in which population needs can be accurately assessed in the absence of profiteering. It will be a quicker, more centralized, more responsive system because it is structured to be resistant to conflicts of interest. The goal of a Single Payer system is to provide necessary healthcare to everyone, NOT quibble about piecemeal, temporary gimmicks like price-posting.

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.