Seven Days in November:
Healthcare and the Road Ahead

As if an acrimonious campaign and stunning election were not enough, the past seven days have been rife with anxiety and fear that the Republic is crumbling. In healthcare, the Affordable Care Act (ACA), Medicare, Medicaid–and you name it–many federal entitlements– are at risk of evisceration, with nothing substantive to replace it intended or on the drawing board. How will people get and afford healthcare under this order with no safety net?

Today, PatientPOV returns to its roots and gets back to the work of uncovering the gaps between the powers that be and the people. Any of us could be patients and caregivers at some point in our lives. Some of us have had terrible illnesses, been taken up with caregiving, and as a result, experienced economic hardships and disruption in work.

In the past few days, I began to talk with people in red states who are worried about the future of healthcare as the new order frames it. It’s premature to put it into a story, but I will write about it soon.

During the campaign, Trump didn’t have much of a health plan unless you want to call promoting health savings accounts a platform. But health savings accounts are largely limited to people with disposable incomes who can shelter money for health expenses. It’s not insurance at all. Clearly, health savings accounts were the bare minimum that alone, would not fly, post-election.

In the last seven days, Trump and Republican leaders sure have amplified their intentions. Now we are hearing about the dismantling of popular programs that have insured millions or provided a a safety net for many others. It’s overwhelming to consider the programs Trump and Republican leaders are earmarking for extinction. But I hope to air here people’s discontent about the proposed overhaul of healthcare as we know it.

If you’ve got something to say about this, please put it in the comments below. To quote Yogi: “It’s not over till it’s over.” It’s been seven days. Stand up now. Get ready for the long haul. It’s the only way forward.


Will Patients Win with Transparent Hospital-Bill Mandates?


If you had a chance to read Steve Brill’s enormous piece on outrageous hospital bills in Time earlier this year, you probably found it an eye-opener.  Speaking before Physicians for a National Health Program meeting in New York last night, Brill said: “The anger is really building.” Brill is making the rounds now, speaking around the country. He put the blame on hospitals, administrative costs, and device salespeople, who reap excessive profits from patients.

Doctors and nurses (who incidentally accounted for much of the audience) are not the culprits in out-of-control prices, he explained repeatedly during his presentation. Not discussed, though, was the fact that some doctors do receive outrageous compensation from hospitals and medical schools. According to Wikipedia, David B. Samadi, MD, Vice Chair of Robotics and Minimally Invasive Surgery, at Mount Sinai School of Medicine in New York, where the meeting was held, received annual compensation in 2010 of $6,389,585. He was the highest paid person at the medical school. The figure was taken from the medical school’s tax return, according to Wikipedia. You have to wonder how many doctors are on academic medical center payrolls, and to what extent, their pay is transferred into your bill. Surely, Mount Sinai is not paying Dr. Samadi as a loss.

Hospital Charge Stories Take Media by Storm

A slew of articles are out today on hospital cost variation in Medicare that coincide with the federal government’s release of prices for the 100 most common inpatient procedures. The hospital costs published today come from the hospitals’ chargemaster.

Washington Post’s May 8 wonkblog reports several stark charge differences. Costs for joint replacement, the most common procedure for Medicare patients, ranged from a low of “$5,304 in Ada, Oklahoma, to $223,373 in Monterey, California, states the WaPo story. In Philadelphia, a simple case of pneumonia without complications cost $124,051 in Philadelphia, compared with $5,093 in Water Valley, Mississippi.

In California, the Los Angeles Times reports similar price differentials, but also points out that since 2006, California hospitals have been required to publish average charges the most common procedures on a state website. Today’s lead story in the New York Times reports that, according to its analysis, hospitals charge about 3 to 5 times more than what Medicare will pay for a given procedure.

Hospital chargemasters are a set of list prices that hospitals use internally, but it’s impossible to see them, unless they are made transparent, Brill explained. “It’s fiction – except it’s not fiction for the people who get billed, who are uninsured or have lousy coverage,” he said. Importantly, he pointed out that at least 60% of personal bankruptcies are attributable to excessive bills. The nation’s teaching hospitals defend higher cost structure. The hospitals claim that higher costs are necessary for teaching and treating sicker and older patients.

Brill and others see price transparency as an opening for reform. Do you think publishing prices like this will help you? Have you been stunned by charges on bills that you have gotten?








Medicare Case a Win For Patients
With Chronic, Debilitating Conditions, Disabilities

Patients on Medicare with chronic conditions and disabilities will no longer have to show improvement to get skilled care and therapy services, according to a proposed settlement of a class action suit, Jimmo v. Sebelius. The settlement clarifies the standard for Medicare coverage, ending the practice of denying coverage to patients deemed no longer able to improve, which was never part of the Medicare statute.  Proponents say that Medicare patients likely to benefit include those with disabling conditions, including multiple sclerosis, Parkinson’s disease, arthritis, stroke, and heart disease.

“We were plaintiffs in this suit,” said David Chatel, Executive Vice President, Government Affairs, National Multiple Sclerosis Society, Washington, DC. Chatel was adamant that this is  “not a new benefit, but a clarification for patients that were inappropriately denied coverage.” Importantly, the Medicare statute never included an improvement requirement. However, patients seeking rehabilitative therapies (speech, physical therapy, and occupational therapy, for example)are frequently turned down because they failed to show progress. Once they fail to show progress, they are put into a “custodial” classification, not covered by Medicare. As a result, the practice has left patients likely to benefit from services abandoned by the system and at increased risk of further deterioration and hospitalization.

The Maintenance Standard

Under the settlement, Medicare must pay for:

  • outpatient therapy,
  • home health care, and
  • skilled nursing

if needed to “maintain the patient’s current condition, or prevent or slow further deterioration.”

Aditya Ganapathiraju sustained a spinal cord injury several years ago. At the time of the accident, he was extremely weak and did not use much physical therapy. “I was in a lot of pain and lost a lot of weight,” he said. “Had I been able to get therapy post injury, I might have made a lot more improvement much earlier. Ganapathiraju says that he has used physical therapy extensively to help him with transferring and strengthening, permitting him to do a host of things he never could have envisioned at the start.  For example, he now drives, went back to school and graduated from the University of Washington Seattle, and is involved in training and research in rehabilitation medicine at the University of Washington. He is also an advocate with a presence on YouTube.

Ganapathiraju added: “The notion of maintenance to prevent further degradation is well founded. You can quickly degenerate quickly post injury.” Among the many benefits that he sees include prevention of contractures [abnormal, permanent shortening of muscle], prevention of surgery, improving seat function, and activities of daily living.”

But what really troubles Ganapathiraju is the notion that a condition prevents people from functioning in day-to-day life. “It’s really a subjective standard and can prove a self-fulfilling prophecy,” he said.

Cost Considerations

Some accounts of the clarification of the Medicare standard claim that it will prove cost-prohibitive. “That’s kind of a red herring,” said Ganapathiraju. “Medicare financing is entirely a political decision. With just a modest increase in the taxes of the very rich, we could really afford Medicare for All.”

  • What’s your point of view? Share it here.

Six Outrageous Threats to Labor and The Public’s Health


Chicago Teachers Union Rally, Labor Day, Daley Plaza, Chicago, Sept. 3, 2012 Credit: Bob Simpson.

When public policy undermines the public’s health, patient empowerment is not really on the table. Patients may be well informed, doctors may share unbiased, good information, but if public policy does not support public health, patient empowerment is just not there. Today, I take up Labor Day and six threats to labor and the public’s health:

  1. Governor Scott Walker’s attacks on collective bargaining.
  2. Privatizing of public programs, for example, Paul Ryan’s push to privatize public services, including Social Security and Medicare, privatizing hospitals, healthcare services, and prisons.
  3. Employers have unfair advantages in union organizing campaigns, including delaying union representation elections, terminating union organizers with impunity, and more.
  4. There is a perceptual problem that people feel that unions are irrelevant. This is a huge problem. Nonunion workers have significantly lower wages, fewer benefits, and no job security, compared to union members.
  5. The rise of unpaid internships with no benefits.
  6. Attempts to rollback of child labor protections – which fortunately,  have been rebuffed.

Voting this November can shut some of this down.

How Avoidable are Hospital Readmissions for Heart Failure?

I knew an elderly man who suffered from heart failure. Every few years, he would get to the point where he couldn’t walk very far, his feet swelled, and he had repeated hospitalizations to get stabilized and get his medication in line. Then, the hospitalizations would stop. He managed reasonably well for some years until he was near the end of his life, when he had lung complications. It wasn’t clear what came first: the lung compromise or the heart failure. He declined rapidly. A friend’s mother has had heart failure for years. She recently started oxygen and is in a hospice program. She hasn’t been in the hospital at all within the past year, and considering everything, she is doing quite well. Yet other older Americans find themselves on a rollercoaster: going in and out of hospitals and not quite understanding their medication regimen, limitations on diet, and the benefits of exercise.

The Centers for Medicare and Medicaid (CMS) has been pushing hard to reduce “potentially unnecessary” and high-cost hospital readmissions for heart failure. More than any other condition, heart failure is the leading cause for readmission. It turns out that, on average, about 1 in 5 people with heart failure will be readmitted within 30 days. A Medicare Payment Advisory Committee survey revealed that Medicare readmissions for all causes total $17 billion.

One target that has been talked about is bringing the heart failure readmission rate down to 1 in 10.

CMS has hospitals scrambling to get these numbers down and nurse-led programs are working to assure better preparation for discharge and self management. The threat of Medicare penalties is looming. Potentially avoidable readmissions for heart attacks, pneumonia, and infections are also under scrutiny.

Hospital Data Viewable on the Web

Some health policymakers consider data on hospital outcomes and patient satisfaction as a potential driver for change.  Already, journalists have picked up the ball, reporting hospitals with higher than average hospital readmissions for heart failure, pneumonia, and infections, and data-hungry public can examine the data now available at the Centers for Medicaid and Medicaid Services MedicareHospitalCompare. Many people think that the public will vote with their feet and take their health care elsewhere if they see high readmission rates or death rates out of whack at their hospitals. It is certainly a consideration, but I wonder whether people in search of care for a chronic condition might pay more attention to outcomes by physicians in their area, if they can find them anywhere. They might pick their doctor, regardless of hospital affiliation.


I spent some time with MedicareHospitalCompare  yesterday, looking at hospitals in my own community. I wish that CMS had a quick-start tutorial on how to use it. I think only data-oriented patients will go through the steps to see how hospitals do in their area. There are limitations with the dataset. You can only compare three hospitals at a time. Some hospitals have data footnoted as problematic, meaning that you don’t know whether to trust it at all. Also, I saw one hospital listed that combined two independent sites that really don’t talk to each other. I flagged one hospital out of six that had a higher than average heart failure readmission rate. I wondered about that and may consider looking for doctors not affiliated with that particular hospital.

Heart Failure Self Management

Policymakers hope that patients with heart failure can be educated to better self-manage their disease. It is certainly an admirable goal. Indeed, around the country, panoply of interventions are being tried, including transitional care, hospital-to-home programs, and cognitive training on medication and weight management. Numerous other strategies are being evaluated, including remote monitoring and telephone consultation. Nurses are doing yeoman work to smooth out the care and their efforts should be applauded. I’ll discuss some of this work in a subsequent post in the next week.

I’d like to hear from readers on what you think would help patients and caregivers. Do you or has someone close to you suffered from heart failure? How are they managing? What has helped them? Is there information that you would like to see made available that would help you pick a doctor or facility that provides high-quality care? Have you participated in any programs that have helped you or your family manage heart failure and stay out of the hospital?


Underused, Shingles Vaccine Beset with Problems

Shingles on the waist, above the eye, and forehead, CDC.

If you talk with people who have had shingles, many will tell you that it took a terrible toll on them and that they wish that they could forget about the entire experience. Some can’t. “Freddy” had shingles three years ago, when he was 61. A decorated Vietnam veteran, he told me that nothing prepared him for the incredible pain, headaches, fever, nausea, and numbness that he had from shingles. Freddy had a painful rash on his left side and fluid filled blisters. His entire left side was affected and he says that he still has numbness. He went to work, but was miserable, and immediately went to bed when he got home. His doctor told him that his symptoms were “classic” signs and symptoms.

In 2006, the shingles vaccine was approved and recommended for people age 60 whose immune system was good. However, the uptake for the vaccine is just 10 percent. If this was the case with uptake of childhood vaccines, people would be in an uproar.

Shingles is caused by the same virus that causes chicken pox, the varicella- or herpes-zoster virus. Once you have chicken pox, the virus remains in your body in a dormant state for the rest of your life. The risk for shingles rises with age.

  • The Shingles Prevention Study found that the vaccine reduced the odds of getting shingles and postherpetic neuralgia (pain along a nerve three months after symptoms begin) by 51 percent;
  • The shingles vaccine is covered under Medicare Part D; however copays vary widely, depending on your plan;
  • About one in three individuals will get shingles in their lifetime;
  • Those individuals who get vaccinated and get shingles will have a less severe case, have decreased likelihood of loss of work, and lower treatment costs;
  • In one study, African Americans got vaccinated less and the risk for shingles was lower; however, researchers maintain that the burden is still considerable and urge all groups to get the vaccine;
  • Because the vaccine was only licensed recently, the duration of its effectiveness remains unclear and is under study.
  • The Advisory Committee for Immunization Practices recommends that people age 60 and over get the vaccine. However, most people don’t know about it, doctors don’t recommend it, and pharmacies often don’t carry it because of storage issues. It is also one of the costliest vaccines available: costing as much as 20 times what the flu vaccine costs, and 4 times as much as the pneumonia vaccine.

Freddy says that he would have definitely gotten the vaccine, but he knew nothing about it. That says something: Freddy works as an analyst for a health agency in the mid-Atlantic.

“This vaccine is a perfect storm,” says Rafael Harpaz, MD, MPH, epidemiologist with the Centers for Disease Control and Prevention, Immunization Services, National Center for Immunization and Respiratory Diseases, Atlanta GA. “It is one of the most expensive vaccines, there are big supply shortages, the manufacturer [Merck] does not promote it, and doctors don’t tell patients about it because it is difficult to get. Added to that are reimbursement issues: it may be unaffordable or require cumbersome paperwork for people to get their money back.”

In New York, one patient told me that she went to several chain drugstores: all told her that they never carry it and her doctor had no idea where to find the vaccine. Finally, a pharmacist at an independent pharmacy told her that the vaccine was on order and that they would have it in four months. That was not all. She’d get a prescription from her doctor, have to pick up the vaccine dose, and have the doctor give her the shot. The pharmacy warned her to check with her health plan on the cost so that she would be sure that she wanted it. She gave up.

Harpaz pointed out that adult vaccines are “an extremely tough sell.” It took decades to get the pneumonia vaccine up front and it took doctors demonstrating that preventing pneumonia was cost effective and pushing it aggressively as a way to stop unnecessary hospitalizations. The pneumonia vaccine is part of Medicare Part B.

Shingles vaccines may not be promoted very much unless more data comes out that demonstrates adverse effects on employee work performance (days out of work, in pain, and discomfort) or high treatment costs linked for people who don’t get vaccinated.

The shingles vaccine is covered under Medicare Part D, but that doesn’t mean it is affordable. Out of pocket expenses for the vaccine are all over the map, very much dependent on who negotiates what contracts with whom.  The Government Accounting Office is exploring ways to make these vaccines more accessible and simplifying payment and reimbursement.

My $5,000 Tooth and the Institute of Medicine Dental Report

What a coincidence! The Institute of Medicine released a report today titled Improving Access to Oral Health Care for Vulnerable and Underserved Populations and I am one step further in my saga of trying to save a tooth! It is looking good in the save-the-tooth department, but this dental care is breaking my wallet. I lost a bit of time this week blogging and working because of pain. I don’t have the money to pay for this.

I am sad to say that no matter what I do, in New York City, this was bound to cost me thousands of dollars. I have no dental insurance. Not mentioned in the report are the extraordinary numbers of Americans out of work. Affordability is mentioned, of course, but the report doesn’t get into fixing that very much. Dental care is a luxury for people unemployed or under-employed and I put myself in that camp. I have been in a tizzy about what to do most of this week.

The Limits of Shared Decision Making

The shared decision making (SDM) people would have thought the world of my dentist, who kept trying to explain various treatment options, as if I was sizing up whether to buy a sofa, or a loveseat and a chair, or two chairs. Missing from the script was any discussion of dollars, as if it was a variable that was beyond the scope of the decision-making. I think that is a big mistake. I was buoyed this week, when an SDM proponent told me that the community is debating just how to bring $$ into treatment discussions.

I investigated the $$ situation on my own. I quickly learned that the cheapest course of care would have been pulling the tooth and getting a flipper (a tooth that you remove at night).  This is the course of action that the poor and the vulnerable get. But the other options—#2 – a root canal plus a post, core, and crown, can put you out a few thousand dollars. That is what I opted for. Option 3 is a tooth pull, combined with an implant,  a crown, and depending on the tooth, possibly a sinus flap, that can put you out thousands of dollars. It’s not uncommon to see payment plan brochures at dental offices, meaning that in the end, the dentist gets these fees, plus you shell out interest, bringing your out of pocket costs way up.

In high school, I had an after-school job with a dentist, who ended up removing teeth in an emergency for a lot of first-generation immigrants. Aside from preparing his instruments, my job was to hold the hands of these people; many came to the office in agony. Some had tried unsuccessfully to pull their own teeth. For the most part, we didn’t see these people again for a bridge. Some lived with a half a set of teeth. It was one of the first jobs where I felt that I was helping people feel better. I cannot say it is reassuring to see that, years later, I am in the same predicament as new immigrants in seeking dental care. I have worked hard all my life, but I cannot afford quality dental care.

Well, I am glad that Congress got the IOM panel to look at dental care for the poor and underserved, but I know that the Health Resources and Service Administration and the California Healthcare Foundation did not quite have me in mind when they solicited this report. It addresses vulnerable and underserved children, Medicaid, and Medicare patients, showing that in 2006, 4.6 million children missed dental check-ups, only 38 percent of retirees had dental coverage,  Medicaid providers are poorly reimbursed. I agree that these are  high-priority populations for basic dental coverage.

The report recommends expansion of the use of dental hygienists and assistants in areas of high need, underserved areas. The American Dental Association praised the report in a statement, particularly applauding the recommendation of increasing Medicaid reimbursement and support  for dental training programs.  If initiatives come forward that threaten the income of dentists in caring for less vulnerable, patients , it would not surprise me if ADA caused a ruckus.

I am glad that dental health care is being discussed nationally, but I can’t say the IOM report is cause for encouragement. Across town from the Institute of Medicine, major efforts are afoot to dismantle Medicare and Medicaid. I don’t see dental care becoming affordable for the vast numbers of Americans.

Alzheimer’s Disease Issues – Day 2:
Let’s Keep the Conversation Going

I spent today at an all day Alzheimer’s meeting, taking notes and tweeting. I am also exhausted. Many of you know that this is my 23rd consecutive day blogging here. There are a lot of pluses to posting every day, but on a night like this, where I have been focusing all day on new, often dense material, I run the risk of being incoherent.

Here are some issues that are related to aging, Alzheimer’s, and dementias, that we all might want to think about:

I am tremendously concerned about the future of Medicare and access to affordable drugs and long-term care services. I also worry about extension of the retirement age that is under discussion when so many Americans over age 50 don’t even have work or are under-employed. News that women are not bounding back to work as quickly as men is frightening. The jobs picture must change.

Like many disease categories, Alzheimer’s is spoken of frequently in terms of early detection and urging transparently charting it on people’s medical records. Yet, as speakers pointed out, once someone is labeled as having cognitive problems on health records, they may become more dispensable at work because Alzheimer’s care is extremely costly. How can we come to grips with this?

Stigma associated with cognitive impairment remains huge, current treatment may alleviate symptoms in some, but treatments only help a small proportion of a people for a relatively small window of time.

There is a movement promoting using creative arts to engage people with Alzheimer’s. Today, we saw the movie, I Remember Better When I Paint, available on DVD from the Hidalgos Foundation. There are people around the US and elsewhere working with theater, dance, music, and art to engage Alzheimer’s patients.

We have a long way to go in shaping a fair and equitable national planning strategy for Alzheimer’s care. This conversation should continue.

Follow me on twitter at lauranewmanny.

When Colorectal Cancer Screening is Too Much, Too Frequent, or Not Enough

No other disease advocacy group has built as effective an awareness campaign as the cancer societies. It has helped to build support for prevention, research, and treatments, but I wonder whether excess awareness could be contributing to the overuse of colorectal cancer screening in older people. They have been exposed to this message for decades.

Earlier this week, Archives of Internal Medicine published two studies and an editorial pointing out problems with the lack of targeting in colorectal cancer screening (either fecal occult blood test (FOBT) and/or colonoscopy) to people most likely to benefit.

The fecal occult blood test checks for blood in your stool and is a noninvasive test that can be done easily as a first screen for colorectal cancer. Costs vary, depending on the laboratory, but $100 for the test is common. In the VA and among countries where costs are of concern, FOBT is often the initial cancer screening test of choice, offered to asymptomatic people in their fifties and sixties annually. If the test is suspicious, a colonoscopy is more definitive. Colonoscopy costs also vary, but it is not uncommon to cost $1000.

A study led by Christine Kistler, MD, raises questions about how well colorectal cancer screening is targeted. It’s a study of veterans age 70 and older at 4 VA facilities. The study revealed:

• Too many older people with significant health problems are getting screened; many are getting screened when their life expectancy is shorter than 5 years and they are likely die from other causes. Nearly half of the patients who had a fecal occult blood test (FOBT) didn’t have a follow-up colonoscopy in the 7-years of follow-up, and half of those died from other causes within 5 years

• Slightly more than 1/2  of  people who had a positive FOBT went on to have a follow-up colonoscopy in the 7 year follow-up period; at least a quarter of these had significant disease found, including 6 cases of cancer.

• Of those who had significant adenomas and cancer found on follow-up colonoscopy, some of these older individuals had serious complications from treatment, including time in the ICU, chronic ostomy leakage, or a hypoxic event.

“A colonoscopy clearly has risks,” explained Christine Kistler, MD, the study’s lead author, and assistant professor of Family Medicine at the University of North Carolina at Chapel Hill. “It’s not just a walk in the park for elderly patients with lots of health problems.”

A second study led by James Goodwin, MD, from the University of Texas Medical Branch, Galveston, TX, reviewed a 5 percent sample of Medicare enrollees to find average-risk people undergoing screening colonoscopy. Patients between age 75 and 79 or 80 years and older received a second colonoscopy examination 46 percentand 33 percent respectively within 7 years. Detailed analysis showed that higher rates of repeated colonoscopy was associated with being male, having more illnesses, and seeing a high volume colonoscopy provider. There was plenty of geographic variation, as low as 5 percent to 50 percent. The authors concluded that current Medicare policies that limit colonoscopy to once every ten years are not succeeding in slowing widespread use of colonoscopy.

The authors were both quick to point out that some groups are not getting the recommended cancer screenings that they need.

Colon Cancer Screening Recommendations

Current guidelines from the US Preventive Services Task Force and the American Cancer Society recommend regular colon cancer screenings begin at age 50 and continue until age 75. People with a higher risk should begin screening at a younger age, and they may need to be tested more frequently. Beyond age 75, USPSTF and ACS state that screening decisions should be individualized, factoring in life expectancy, other health problems, ability to tolerate a colonoscopy, and net expected benefit. In the UK, colorectal cancer screening is recommended for individuals until their 70s.

How do you get healthy people on the right track towards getting proven cancer screenings that can save lives at the recommended ages? And how do you get doctors on board to advise screening at those intervals.

A Patient POV and Her Daughter

I’ll tell you a story about my mother who died at age 92. Until the last 6 months of her life, she was in excellent shape. She religiously went for a Pap test and mammogram every year until shortly before she died. It didn’t make a lot of sense to me and I tried to convince her otherwise.

I knew that the US Preventive Services Task Force found no evidence for mammography over age 75. Some investigators say that it may be beneficial to continue mammography screening if life expectancy is 10 years. For Pap tests, for women who have previous normals and no other risk factors, you can stop at age 65.

So I couldn’t convince my mother to stop.  I assume she had regular colonoscopies as well. She had reason to go besides. She got reminders from her primary care doctor whose office was at an academic medical center. Her insurance covered it.

Dr. Kistler suggested that my mother might have had another reason for keeping these screenings up. “Sometimes if you suggest stopping, patients think that they are giving up.”  Sure enough, she didn’t stop getting screened for breast cancer and cervical cancer until she was declining in the last year of her life.

The astronomical dollars spent on end of life care are one thing that we have heard lots about, but what about the decades of cancer screenings in the golden years for no benefit, and possible harm. That needs to be examined too.