Mental Health and the Patient Point of View:
More High-Quality Stories Needed

Posted on March 6, 2013 by Laura Newman
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I am thrilled that later today, Martha Roberts’ post on her own experience taking medication for mental illness, will run here. I first came across her post through a tweet from Ben Goldacre, author of Bad Pharma. It’s nice to know that he has not oversimplified the “bad pharma” argument into this meme: all drugs are inevitably bad for mental illness, overused, and inappropriate. Yes, there are huge problems with selective publishing of clinical trials data, withholding negative drug trials, and more. But mental health and mental illness are a lot more nuanced than a simple meme.

A lot more ink needs to be written about mental illnesses from the patient point of view, that show the real-life hurdles of people unfairly stigmatized, unemployed, or under-employed. I hope that this upcoming post (I’ll link to it here) is the first of many more.

If you have something to say about this, use the comments, or if you have a longer contribution, email me at patientpov “at” gmail dot com.

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Judge to SUNY/Downstate:
Halt Long Island College Hospital Closure

Posted on February 21, 2013 by Laura Newman
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State University of New York Trustees were ordered in no uncertain terms to put a temporary stop to the closing of Long Island College Hospital (LICH) in North Brooklyn. The order came down from a Brooklyn judge earlier today, who was responding to a suit filed by the New York State Nurses Association, Local 1199 of the Service Employees International Union, and a group of doctors from the hospital, protesting SUNY’s planned closure of LICH. SUNY/Downstate personnel are also barred from “any communication” with the State Health Department concerning their proposed plans, which were initially made in a closed-door meeting.

PatientPOV.org outlined the specter of hospital closures in Brooklyn threatening patient and emergency care for patients in North and Central Brooklyn in a post Feb. 8th. SUNY Trustees had met privately and stunned the community when it announced it would reorganize hospital care, closing Long Island College Hospital, and beefing up services at Downstate, which is directly across the street from Kings County Hospital Center. The SUNY Trustees’ plan flies in the face of the State’s commissioned report on Medicaid Redesign in Brooklyn.

Even though a March 7th public hearing is scheduled on the suit, SUNY/Downstate has been starving LICH, not assigning attending physicians, interns and residents to the facility, according to LICH staff. Although the plaintiffs view this temporary restraining order as a huge win for patients and staff, the long-term future of hospitals in Brooklyn remains up in the air. A key question is whether the State Health Department and Governor Cuomo will rise to the occasion, back their own Medicaid Redesign Report, and orchestrate a solution to keep the hospital open.

 

 

 

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NAPWA Folds, Leaving $700K in Debt

Posted on February 15, 2013 by Laura Newman
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The National Association of People with AIDS (NAPWA) has closed down and it has filed for bankruptcy and liquidation. People familiar with NAPWA knew that more than $700,000 was unaccounted for or missing, according to media reports. NAPWA’s President Frank Oldham, Jr. was slated to resign Dec. 31, but left earlier in the year, perhaps pressured by his Board. The news came in an email press release last night from Tyler TerMeer, from the Ohio AIDS Coalition. It was a grim footnote to Valentine’s Day.

An article in this morning’s Washington Blade reveals failures to meet payroll and rent of its Silver Spring office, funds due the District of Columbia HIV/AIDS, Hepatitis, and Sexually Transmitted Disease Administration (HAHSTA).

It’s a sad ending to an organization that was out front in the early days of the AIDS epidemic. As TerMeer writes: “NAPWA was founded in 1983 to implement the Denver Principles, in which those living with the still-new disease syndrome claimed the right to be called ‘People with AIDS,’ not ‘AIDS victims,’ and to be at the table to speak for themselves when medical and policy decisions were being made. Thirty years later, that is recognized as best practice in medical and policy settings and will continue to be so for as long as HIV is still with us.”

I first got wind of problems with NAPWA after Mayor Edward Koch died. I tried unsuccessfully to reach former NAPWA President Frank Oldham, Jr., who spent years working for AIDS funding during the Koch years. The NYTimes obituary of Koch omitted any attention to the AIDS crisis in New York City during the Koch years. It was later corrected and the subject of scorn on social media. Many people considered Koch in the closet and not respectful of AIDS activists. Oldham, also a person with HIV, was a major force in getting AIDS care in Chicago and New York.

In an earlier interview with Frank Oldham, Jr. for PatientPOV.org, he remarked to me how impossible Koch was in addressing the AIDS crisis. A broad infrastructure now exists, including many more grassroots organizations across the United States, to support people with HIV and AIDS. That said, nonprofits devoted to HIV/AIDS work struggle. This is especially unfortunate, given that in the early days of the AIDS crisis, NAPWA was a leading light.

Frank Oldham, Jr.

Frank Oldham, Jr., immediate past-President of NAPWA.

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Repeating Koch’s Biggest Blunder

Posted on February 8, 2013 by Laura Newman
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Few people remember Mayor Edward Koch regretting anything, much less anything he fought tooth and nail for, and belligerently. Tucked into the New York Times obituary Feb. 1 was a little-known fact that Koch, who championed the closure of Harlem’s Sydenham Hospital, later acknowledged privately that he regretted closing it. Despite fierce community opposition and his closest aides telling him to give it up, he insisted on the closure of the hospital. He told an audience at New York’s 92nd Street Y that it was a huge mistake.

“It was Sydenham all over again,” a Brooklyn resident told me, reflecting on last night’s packed Town Meeting and scores of pickets outside. What’s at stake is the closure of two Brooklyn hospitals: Long Island College Hospital (LICH) now managed by Downstate Medical Center in Downtown/North Brooklyn, and Interfaith Medical Center, in Central Brooklyn. Have New York policymakers learned the lesson that Koch learned too late, or will this mistake be repeated in Brooklyn? Will Brooklyn residents with emergencies: strokes, heart attacks, what have you, get to the hospital in time to survive?

Credit: wikitravel.org

At a Town Meeting last night in Manhattan, elected leaders, patients, and staff spoke out, vociferously opposing Downstate’s vote to close Long Island College Hospital. A protester called H. Carl McCall, chair of SUNY Board of Trustees, a “sell-out.” The story continues to unfold, but it must be stressed that the State Health Commissioner has opposed the Long Island College Hospital Closure.

A Nov. 28, 2011 Brooklyn Medicaid Design Report (titled At the Brink of Transformation: Restructuring the Healthcare Delivery System in Brooklyn), a report commissioned and approved by the New York State Health Commissioner concluded:

“In light of the recent acquisition of LICH, SUNY Downstate should consider consolidating inpatient services at the LICH campus, thereby eliminating excess capacity and permitting the medical center to focus on inpatient resources and the expansion of services at Kings County Hospital, SUNY Downstate should reconsider any planned expansion of beds at the former Victory Hospital site and any development of an ambulatory care facility in the vicinity of University Hospital or at the former Victory Hospital site should be denied.”-NY Medicaid Redesign Report, 2011, Downloaded from NYS Department of Health website.

The Long Island College Hospital Community

The community is livid. For more than ten years, Continuum owned LICH. According to many at the meeting, Continuum sold off valuable properties in Downtown Brooklyn and used them to bolster Manhattan facilities. Downstate was brought in to rescue LICH, yet voted earlier this week to close Long Island College Hospital.

Anyone who has driven in North Brooklyn knows that the traffic is excessive. Without Long Island College Hospital, North Brooklyn residents might never get to a hospital in time. Last night, a resident spoke about his wife who had a heart attack and made it through at Long Island College Hospital. He argued that with the excess minutes driving to Brooklyn Hospital or Lutheran Hospital, or across the bridge, and his wife would have been dead. Downstate cannot act in a vacuum and public hearings will be held. Many people doubt that the State will authorize Downstate to go ahead. That should reassure residents in Brooklyn.

According to a press release issued today by Brooklyn City Council Member Letitia “Tish” James, “Employees of both hospitals have criticized SUNY, and have suggested that the proposed closures will facilitate the transition to for-profit healthcare in Brooklyn, citing “an experimental ‘pilot program’ in the governor’s draft budget that would allow private investors to create a for- profit hospital in Brooklyn.”

“There is no justification for closing hospitals, instead of providing them with the resources they need to be successful,” said James. “These proposed shutdowns are deeply upsetting and should concern all Brooklyn residents.” Also troubling are media reports that SUNY plans to sell LICH to residential developers likely to create luxury condos, noted James.

Interfaith Medical Center

Interfaith Medical Center is another story. Serving poor African-American and Caribbean American residents in Central Brooklyn, Interfaith declared bankruptcy on December 3rd. About one-third of the beds at Interfaith are for behavioral and substance abuse. Without these beds, marked gaps in mental health services will remain. Medical and surgical beds account for other beds.

The Brooklyn Medicaid Design Group recommended an integration between Interfaith Hospital, Wyckoff Hospital, and Brooklyn Hospital, with Brooklyn Hospital, the lead. Wyckoff Hospital refused the plan. Earlier this week, Interfaith signed a Memorandum of Understanding, leaving Interfaith and Brooklyn to negotiate the terms of integration.

But the group, Save Our Safety Net, worries that Brooklyn Hospital will take over, cutting all but psychiatry services, services for the elderly, and a hospice.  “The community needs more services than that,” said health activist Judy Wessler.

James said: “New York State needs to step up and secure the $20 million needed to guarantee another year of health services for Bed-Stuy and Crown Heights residents. Under the leadership of Governor Cuomo, I believe a merger that incorporates the vision of Interfaith can be established. It is imperative that we move towards that goal to save this comprehensive hospital and the 1600 jobs that would otherwise be eliminated.”

 

 

 

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We Need to Recognize Conscience
In Provision of Reproductive Services

Posted on February 2, 2013 by Laura Newman
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The Obama Administration made a concession to Catholic leaders yesterday, bowing to conscience-based refusals to subsidize contraception coverage. At the same time, a compromise was struck enabling women who work for Catholic nonprofit institutions to use separate insurance plans independent from the church to obtain coverage for contraception at no out-of-pocket cost. The National Health Law Program stated: “Today’s announcement is largely a victory for women who have been fighting alongside health advocates for the past two years while employers threatened to deny women coverage for birth control in the courts and as lawmakers attacked and resisted implementation. No employer should be able to make personal decisions for their employees, including whether or when a woman is able to access birth control.”

However, the conscience-based contraception and abortion refusers are unlikely to let rulings like this stick. They promise to keep pressing for exemptions to providing reproductive services based on conscience.

But the Catholic Church does not have a monopoly on conscience. I neglected to cover an important New England Journal of Medicine Perspectives piece last fall, also overlooked by the mainstream press by Lisa H. Harris, MD, PhD.  Harris drew attention to recognizing conscience in abortion provision.

Harris pointed to “an ongoing false dichotomization of abortion and conscience, making it appear that all abortion opponents support legal protections of conscience and all supporters of abortion rights oppose such protections, with little nuance in either position.” What perpetuating this falsehood has done is permitted laws that fail to protect caregivers who are compelled by conscience to offer care, rather than refuse it, Harris argues.

Like many readers, I cannot believe that we are back to trying preserve the legalization of abortion and access to contraceptive care services. Day after day, roadblocks to reproductive care services are introduced, many claiming moral superiority, we need to underscore, as Harris and many others before her have done, that before the legalization of abortion, providers performed abortions “for reasons of conscience.”

Harris points out that before abortion was legal, many providers rallied to provide safe abortions to prevent women from dying from self-induced abortions and abortions provided by unskilled providers. This was a matter of conscience. Today, Harris explains, “abortion providers working within the law continue to describe their work in moral terms as “right and good and important” and articulate that the failure to offer abortion care generates a crisis of conscience.” It’s a moral imperative that underlies belief in “women’s reproductive autonomy as the linchpin of full personhood and self determination.”

On one hand, I am glad that the compromise yesterday ensures that women who work for religious organizations will be able to gain the same access to contraception as other women. However, I think we must continue to press for equitable access to contraception for all women. If we must work around conscience-based refusals, it is high time that we recognized conscience-based provision of reproductive care services.

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Warning Signs No. 2: Metal-on-Metal Hips,
Lung Cancer Death Rates, Ecigarette and Food Safety

Posted on January 25, 2013 by Laura Newman
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It’s a new year and here’s another segment on warning signs. I am glad to see that this month, the hazards of metal-on-metal hips, covered in the first warning signs issue, are being examined.

40% Failure Rate of Johnson and Johnson’s Metal-on-Metal Hip

People contemplating a joint replacement should take a close look at this story. Barry Meier, reporter at the New York Times, reported on Jan. 22. that Johnson & Johnson , knew about its Articular Surface Replacement hip, or A.S.R.’s 40% failure rate within 5 years of surgery.

“The episode represents one of the biggest medical device failures in recent decades and the forthcoming trial is expected to shed light on what officials of Johnson & Johnson’s DePuy Orthopaedics division knew about the device’s problem before its recall and the actions they took or did not take.” Barry Meier, NYT, Jan. 22, 2013. 

Thousands of patients have brought lawsuits concerning the A.S.R. A trial begins today in California Superior Court in Los Angeles. Will this be the straw that breaks the camel’s back in terms of inadequate patient protection in medical device regulation? Will we see a more vigilant FDA?

Lung Cancer Death Rates for Women On Par with Men’s

You may be thrilled, as I was, earlier this week, when President Obama called attention to our nation being inclusive. One milestone that I wish women were spared is their achieving near parity with men in their risk for lung cancer death:

A study in the Jan. 24 New England Journal of Medicine, reveals that as women’s smoking habits have become more like men’s, namely starting to smoke at a younger age and smoking more cigarettes each day, their risk of lung cancer death has risen to the same as men. Removal of the stigma against smoking for women began after World War II, and women in their fifties and older, who smoked are part of this surge.

A related study, by Prabhat Jha at the Center for Global Health Research in Toronto, underscores the value of quitting in helping prevent early smoking-related deaths. Using the Centers for Disease Control and Prevention National Health Interview Survey (NHIS) data, researchers report  threefold greater risk for lung cancer death in current smokers, compared with people who never smoked.

Questionable Oversight of the Electronic (e)cigarette Business.

You can see the advertising all over: electronic cigarettes are marketed as a safer non-tobacco alternative. Is the data in? I have my doubts.

insert on electronic cigarette safety

Thanks @Dirk57 at The Addiction Inbox, who flags the lack of regulation in the e-cigarette business, in a post this week. Big tobacco is moving into this lucrative business quickly, Dirk points out. But do we have reason to trust industry marketing. Additionally, safety data has been inconsistent. Long-term safety data concerning e-cigarettes is unclear.  Dirk raises some important questions.

FDA Belatedly Ramps Up Food Safety

Last fall, Center for Science in the Public Interest made a compelling case for the FDA failing to put food safety preventive programs in place. I called attention to it here. Could some of the produce safety outbreaks (e.g. cantaloupe, peanut butter) we heard about last year been averted? Probably.

Finally, FDA is requiring the food industry to perform a hazard analysis of their facilities and put control programs in place to prevent food pathogens from getting into produce and other parts of the food supply.

Still wanting: regulations for food produced in other countries, warns CSPI.

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Cancer Care and Palliative Care in the US
And Canada: Some Unscientific Observations

Posted on January 11, 2013 by Laura Newman
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I spent a week in Toronto over the holidays, and as I told Customs, it was mostly “pleasure,” but I also never quite got away from thinking about healthcare. Last I left you, I told you about the saga of a friend in the United States getting tertiary level (or high-level specialty care) surgery in a small hospital with neither tertiary-level care capability, nor good quality of-care ratings. Up in Canada, I stayed with a close friend who retired from work in a hospital-based oncology unit. Now spending a bit of her retirement painting, she described herself to me one night as being “in recovery from oncology.” Also in Toronto, I had tea with a physician leader in cancer prevention as well.

All of this occurred within the backdrop of knowing through close friends of two people with cancer in Canada; one was in palliative care in western Canada and died in palliative care after a short illness. The other, a friend’s grand-niece, is getting active treatment in a Calgary tertiary care center for a type of bone cancer that strikes teens: osteosarcoma.  This was not the initial hospital that she was evaluated at.

Unlike the US, in Canada, when a patient has this kind of osteosarcoma, requiring surgery and chemotherapy, s/he is routed to the cancer facility with all the skill to handle it.  This complex care is organized regionally, within a province. According to Canadian colleagues, there is much outreach out of city centers on optimal referrals and appropriate care.  I learned from my retired friend that my friend who was denied a transfer to the most skilled place in my area, that in Toronto, this same person would have been transferred to Princess Margaret Hospital there, which handles all such cases. When we were interested in having my friend transferred to a tertiary level care facility, some physician colleagues told me that hospital transfers to an academic medical center are a piece of cake. “It is seamless, all you have to do is call this 800# and they do everything,” one doctor told me.

The rules are very different for the average patient in the United States. Anybody with an MD can hang out a shingle and claim to be able to treat a complex case. We learned that a transfer can be as daunting as admission to an Ivy League college.

Cancer care hospitals in the US are concerned with their outcomes. If the patient doesn’t look salvageable on certain outcome measures, maybe s/he won’t be able to obtain the  expected transfer. Will the patient advance the hospital’s research agenda? If unlikely, well you had better move aside. Is this fair? Is this equitable? Is this something a patient navigator can help with? I suspect not.

Palliative care also seems to have more of a place in Canada. About 25 years ago, I got my dad into a hospice demonstration project in California when we learned he had 2 to 6 months to live. Believe me, the hospital wanted nothing to do with hospice. I found it on my own and it was the best thing that we did for the sanity and wellbeing of my dad and our family. Once I mentioned the hospice word to the hospital and my father refused to cooperate with yet-one-more endoscopy for a research project and I refused to coerce him, the hospital was ready to move his medical records to the basement.

A few years ago, when my mother was failing, again, I had to bring up hospice to her doctor.  Maybe the death panel propaganda is ruining access to palliative care for many Americans. Maybe comfort care can too easily be translated to pulling the plug and killing people. Maybe, unless it can be made profitable, it just won’t fly in the United States.

I don’t want to unfairly romanticize Canada — although Canadians do make superior tea and Christmas pastries! My analysis is far from scientific. However, I think I may be onto something here and  I urge those with research dollars to investigate some of these patient-centered claims. I’d like regulators to take a look at access via transfer, whether JCAHO, Department of Justice, ProPublica, or others.

I do think something changes north of the United States when the multitude of insurance carriers turns into a single payer, when care doesn’t hinge on volume and number of procedures. There seems to be more of a chance for equity –something I don’t see coming to the US too soon.

 

 

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Patient POV’s Most Popular and Important Posts in 2012

Posted on December 31, 2012 by Laura Newman
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Here they are: the most popular and important posts on Patient POV this year:

The Top 10 Reasons Why Warren Buffett’s to Treat Prostate Cancer Bugs Me

This post got me on the radio for the very first time in my life a very short segment on Ira Flatow’s Science Friday. I love radio and hope you support programming like this today and through the year ahead. And yes, I’d love it if you contacted me for paid  speaking or writing engagements this year.

MR Imaging, Electronic Test-Ordering Create Waste

Despite rough times economically, we have a love affair with new technologies that are overused proving a colossal waste of money and resource use.

Are Dense Breast, Right-to-Know Laws Helpful?

Legislators just can’t say “no” to this and unless the public can be convinced otherwise, in 2013, we will see more of these laws pass in many more states. Sadly, just as this post went up, Governor Jerry Brown authorized a dense-breast law in California.

Healthcare System Fail: Let’s Get Serious About Disparities

Let’s give more than lip service to  healthcare disparities in 2013. This story, IMHO, is emblematic of what happens when many minorities land in the healthcare system. Disparities didn’t end with Rebecca Skloot’s exposure of deficits in informed consent in The Immortal Life of Henrietta Lacks. We have to stay on the case.

Seeking a Second, More Specialized Opinion for a Rare Genetic Disease by Ricki Lewis

This is a critically important issue that many people know much about. I am grateful that Ricki Lewis, PhD, author of The Forever Fix: Gene Therapy and the Boy Who Saved It, DNA Science blogger, genetics counselor, dear friend, and so much more, brought this issue up in a guest post. If only we had a more rational healthcare system, so people with rare disorders were routed to the doctors most familiar with these conditions.

Why Sanofi’s Zaltrap Deal Won’t Help Patients (originally published in the Scientific American Guest Blog – thank you @Boraz)

Despite all the rhetoric about value-based healthcare, patients have yet to enter in to getting value-based care in their terms. Let’s stay on this moving forward.

Warning Signs: First Edition

I may be using this format more in 2013: a way to point up trends, some worrisome, some positive. Alert me if you think something is worth ink that I might not see.

Finally, a big thanks to people who have talked to me about these issues and helped me to articulate what matters to patients. Let’s talk more in the new year. And a plug I rarely make: I need more paid work. This blog is a labor of love. It has not monetized. Feel free to contribute via PayPal to keep it going. If you are in a position to bolster the Patient POV, looking for a good writer or speaker, please get in touch at patientpov “at” gmail “dot” com, via twitter to lauranewmanny. Also, follow me on Facebook here.

Happy New Year to All, and to All A Good Night!
 

 

 

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Healthcare System Fail: Let’s Get Serious About Disparities

Posted on December 24, 2012 by Laura Newman
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AKA The Billie Holiday Blues on Christmas: A Friend Gets Tertiary Level Care at a Low-Quality Hospital

It’s the day before Christmas and I’ve been involved in a medical crisis that nobody ever wants to face. Someone I know, who is an insured minority male, was taken to the closest hospital to his house. It turns out that he has an extremely serious diagnosis, requiring complex surgery expeditiously, but judiciously. The first surgery for this condition will play a critical role in his long-term outcome. For this surgery, a second opinion is ALWAYS advised. He did not get one. Whether he was advised of this, we don’t know. From what he tells us, I don’t think he has a clue of what follows the surgery. All sorts of plans will be necessary for his future.

Studies show that for this condition, the best outcomes are at hospitals that treat a high volume of cases, hopefully performed by a surgeon who has done many of these cases. An academic hospital with an expert department is what informed patients would want. The discipline that is involved in treating him is not even listed on the hospital’s website.

He is also at a small hospital that gets very low marks on quality, for example, sepsis, blood infections, and more. It is a small hospital in a not desirable neighborhood (not in New York BTW), a fairly typical hospital of what is available for an impoverished community that treats minorities and immigrants in many parts of the USA.

Informing patients about what is known, uncertainties, and options should be standard practice, but the patient and family proved not very communicative—kind of old style with what doctors say. There  are key cultural differences here for minorities and the poor versus white middle class groups. I wonder whether all that has been written regarding e-patients fits for white middle class people predominantly. I doubt we have scratched the surface in helping minorities and long-term disenfranchised groups get the same access to top-quality care.

My friend insisted on getting the surgery over with as soon as possible and he is in surgery right now at the hospital that the ambulance took him to. Concerned friends and a doctor colleague who know this field, generously talked with him advising him (he has good insurance) to transfer elsewhere. However, he would not budge on what he wanted. He wanted the surgery where he was. So we are respecting his wishes and hoping for the best. We are all a bit of a wreck over this.

This is turning out to be a horrible holiday for all of us.

NEXT UP: What You Don’t Know About Hospital Transfers Could Harm You

 

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