Healthcare (insurance) reform has passed in the Senate and final negotiations are happening before it moves on to the President’s desk for signature. While the legislation is not perfect – in fact some would say far from perfect – it is a piece of legislation that is very much in keeping with our American philosophy, our constant pursuit of progress and change.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.

As I mentioned in my post last week, Disruptive Women in Health Care is tackling the issue of drug adherence, often referred to as America’s other drug problem.  From a health policy standpoint, the issues cross financial, clinical, behavioral, and cultural boundaries.

Over the next two weeks, Disruptive Women and guest bloggers, all experts in their respective field–each representing a different perspective — patient, physician, nurse, pharmacist, researcher, behaviorist, policy analyst, distributor, to name a few–will share their analyses, opinions, and solutions.

At the completion of this series, we will compile an e-book as we did when we tackled the issue of Comparative Effectiveness Research.

THE SCOPE OF THE PROBLEM

A new report, Thinking Outside the Pillbox: A System-wide Approach to Improving Patient Medication Adherence for Chronic Disease, issued by the New England Healthcare Institute (NEHI) found that patients who do not take their medications as prescribed pay a price in poorer health, more frequent hospitalizations and a higher risk of death.

Collectively, noncompliant patients incur up to $290 billion annually in increased medical costs–that’s $290 billion in avoidable medical spending every year, according to the NEHI report.

This is not a new problem, nor is it unique to the US.  In 2003, the World Health Organization (WHO) issued a landmark report entitled Adherence to Long-Term Therapies in which it noted:

Adherence to therapies is a primary determinant of treatment success. Poor adherence attenuates optimum clinical benefits and therefore reduces the overall effectiveness of health systems.

“Medicines will not work if you do not take them.”  Medicines will not be effective if patients do not follow prescribed treatment, yet in developed countries only 50% of patients who suffer from chronic diseases adhere to treatment recommendations. In developing countries, when taken together with poor access to health care, lack of appropriate diagnosis and limited access to medicines, poor adherence is threatening to render futile any effort to tackle chronic conditions, such as diabetes, depression and HIV/AIDS.
This report is based on an exhaustive review of the published literature on the definitions, measurements, epidemiology, economics and interventions applied to nine chronic conditions and their risk factors. These are asthma, cancer (palliative care), depression, diabetes, epilepsy, HIV/AIDS, hypertension, tobacco smoking and tuberculosis.

In the intervening years since the WHO issued its report, adherence has become more problematic.  Numerous reports highlight the ongoing challenges, which are especially critical in the mental health arena.

A study in the American Journal of Psychiatry found that close to 60% of schizophrenics who were prescribed anti-psychotic drugs did not take the medication as prescribed by their physicians.  “We looked at adherence to anti-psychotic medication because they form the backbone of treatment for schizophrenics,” said Dr. Dilip Jesete, co-author of the study.  “These medications are good, but only work when taken properly.”

The study found that psychiatric hospitalizations were higher for people who did not take their medication as prescribed.

When schizophrenics, a disease which affects over 2 million Americans, do not take their medication, they are at risk for dying by suicide.  Four out of ten people who suffer from schizophrenia attempt suicide and one in ten die by suicide.

SOLUTIONS

Despite the complexity of adherence related challenges, a number of promising solutions, innovative responses and well-researched efforts are underway.  Many of these will be described in greater detail in our Drug Adherence series.

Some of these include:

• Text message alerts to remind patients
• Greater use of health care teams
• Integration of health information technology
• Creation of online and offline medication management systems, reminders
• Health e-games
• Insurance reforms
• Public awareness campaigns
• Patient education
• Mobile phone applications
• Research in gender-based barriers

We look forward to your comments and input as we shed light on this critical policy issue.

It has been estimated that 3 out of 4 people report that they do not take their medications as directed, resulting in hundreds of billions of dollars annually in related medical costs and an enormous number of hospital admissions and readmissions.

The reasons for this are complex and varied.  This is a particularly vexing challenge for young, chronically ill patients, for people with mental health diagnoses and for the elderly who may suffer from memory impairment.  Anyone on a complicated drug regimen knows how committed one must be to remain adherent.

For some, cost is an issue while for others side effects can be unpleasant, travelling can compromise the best of intentions as can the need for refrigeration when none is available.  Some patients must take some drugs on an empty stomach and others on a full stomach.  Some patients are simply not ready to accept they have a serious, or lifelong illness. It is complicated.

Because the implications, both clinical as well as financial, are significant, we have invited a number of our Disruptive Women bloggers, as well as some other experts in the field, to join us in a series of policy posts on this critically important issue.

Beginning next week, on October 19th, we will launch our Drug Adherence series which will analyze this challenge from a number of perspectives:  patients, providers, researchers.  In addition, we will also offer innovative solutions.

At the completion of this series, we will compile all the posts into an e-book, just as we did when we tackled the issue of Comparative Effectiveness Research and created our Comparative Effectiveness Research e-book.

If  you or someone you help care for has experiences you would like to share, or you have research, solutions and other thoughts on this topic, I hope you will share them with us.

Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80’s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

We won’t ever be sure what could have been if we had paid more attention to the signs and symptoms. Mom had died in October 2006. Dad had visited her in the hospital and the rehab center and the nursing home for seven months, every day, day after day after day. They had been together for 50+ years. And he had been sure to tell the story of their meeting and their marriage and their lives together to anyone……. well actually to everyone that he met. After mom passed, he slowly managed to go on with his life without her. It was not easy. He had to learn how to use the microwave, how to make coffee, and how to cook. He mastered the art of grocery shopping and doing his own laundry. One day at a time we encouraged him. Slowly he managed to pick up the pieces and take care of himself. Or so we thought. Sure he often spoke of missing her. And he mentioned having trouble sleeping and not really feeling like eating. He told us that he often would get up in the middle of the night and then take naps during the day. He mentioned being invited to join friends for lunch or dinner but not feeling well enough to do so. He seemed more and more tired and uninterested in life. Dad we asked, did you go for a walk today? No, no, no he said, it’s too hot. Dad we said, perhaps you should see the doctor. No, no, no, I have an appointment next month. Dad we said, perhaps you could talk to the Rabbi. No, no, no, I don’t want to bother him. Dad, we said, your friends want to see you. No, no, no I am not good company. Dad, we said, please come visit ….. the grandkids want to see you. No, no, no…it’s just not that easy to travel at my age, he would say. Dad we said, why don’t we all take a vacation together? No, no, no he said, it’s just not easy to get around. Dad we said, why don’t you see a counselor or join a grievance support group? No, no, no, he said, I am just not ready. Dad, we agreed is really, really depressed about mom’s passing… his grief seems insurmountable. He’s really having a hard time being by himself. But even so maybe we should call his doctor…maybe it’s more than depression or grief. It looks like he’s losing weight and he’s always tired and seems to be sleeping more and more. The pain of his loss never seemed to subside. His grief seemed to appear mostly in physical ways: restlessness, exhaustion, sleeping problems, appetite changes, body aches, stiffness of joints, weight loss, and increased fatigue. But two years later he was still suffering much as he had back in 2006. Maybe it was time for us to insist that we go with him to his doctors.

Hmmm said the doctor…..weight loss, tiredness, loss of appetite, decreased energy, and depression. Let’s run some tests. Hmmm said the doctor lets get a scan. Hmmmm said the doctor I think we need an MRI. Hmmm said the doctor, I want to get a liver biopsy. Hmmm, said the doctor I am sorry but its pancreatic cancer and its spread to the liver and given your dad’s age and condition, I don’t think there is much we can do. Dad died in November 2008, two months after his diagnosis.

As the nation focuses on how to cut the cost of so-called health care reform, maybe it’s time to pay attention to demonstrated methods for improving care while reducing costs that are not yet supported by Medicare and other payers. We cannot afford the system we have and changing it should be on the top of the agenda for anyone who wants to extend coverage of health care to all and improve health outcomes.

For example, many readers of this blog will have had the experience of being a patient or family caregiver for someone who is older and has multiple chronic health problems that periodic become acute and require hospitalization. Once discharged from the hospital, the patient and caregiver often feel at a loss for how to manage some of the problems that can arise even within hours of discharge. A study published in the New England Journal of Medicine in April of this year reported that one in five Medicare patients who are discharged from a hospital will be readmitted within 30 days. That number keeps increasing with time, so that by the end of one year, about half of these patients will have been readmitted. This is costing the nation an estimated $17 billion.

Mary Naylor is a nurse researcher at the University of Pennsylvania who has spent more than 20 years developing and studying what she calls a Transitional Care Model (PDF). Under this model of care, an advanced practice registered nurse (APRN) goes into the hospital when high risk (for readmission) patients are admitted. The APRN assesses the patient and family caregiver, clarifies the plan of care and coordinates the input of sometimes multiple health care providers, prepares the patient and family caregiver for discharge, then makes a home visit within the first 24 hours after discharge and continues to work with the patient and family caregiver for up to 90 days post-discharge. Naylor says this is more than “care coordination.” She sees it as an opportunity to help patients and families rethink how they approach and manage their care. The APRN will even go with the patient and family caregiver on a follow up visit to the physician’s office to model how to make the best use of this time.

Naylor isn’t the only one doing this work. Eric Coleman of the University of Colorado at Denver Medical Center and Chad Boult of the John Hopkins University Health Institute have developed variations on the Naylor model. All show that hospital readmission rates decrease, money is saved and health outcomes improve in some way.

Now AARP has worked with Congress to develop a Medicare Transitional Care Act (H.R. 2773/S. 1295) that has been introduced into both houses of Congress. The Act calls for Medicare to pay for a transitional care benefit, first for high-risk patients and then, if the outcomes of this first phase are satisfactory, for low- and moderate-risk patients. It’s long overdue. I now believe it to be unethical for hospitals to discharge patients knowing that they don’t have the knowledge and resources to help them through this difficult transition to home. To read about the details of the bill, go to http://www.govtrack.us/congress/billtext.xpd?bill=s111-1295. The bill needs advocates who will urge Senators and Representatives to sign on as co-sponsors or, at the very least, support this important legislation.

My husband Paul Berger suffered a stroke resulting from a ruptured aneurysm when he was 36—that was 20 years ago. Some things have improved, like treatment—the CT scan then could tell there was bleeding in his brain, but couldn’t locate the site of the burst vessel. A week later, after a follow-up test, he had brain surgery to implant a platinum metal clip. The night before the surgery, he had a re-bleeding, which probably caused the severe stroke, devastating his speech-language functions, and paralyzing the right side of his body. If this had happened today, the improved diagnostics probably would have located the problem immediately, and he might have had a coil or stent threaded through the blood vessel to the aneurysm, instead of opening his skull. He might have had a shorter recovery and little residual disability and I might not be writing this blog as a caregiver.

Some things have not improved—like health insurance coverage. As the years have gone by, coverage for hospital stays and rehabilitation have been shrinking. For example, Medicare has a cap on outpatient rehabilitation that makes no sense—it’s not capped if performed in the more costly hospital outpatient department, but limited to about $1,800 for physical and speech therapy combined, and $1,800 for occupational therapy provided in an office. At current rates, that’s about 45 hours of total therapy, not nearly enough for stroke recovery (to be fair, there is an exceptions process, but it is scheduled to expire at the end of this calendar year).

This leads to a more difficult issue in the health reform debate—what exactly should be covered by health insurance? Acute care, annual preventive visits, post-acute, healthy living coaching? Commercial health insurance has many ways to limit its exposure to the costs of long term chronic conditions, like surviving stroke, including caps on therapy. Another way is challenging access through “pre-existing conditions” ineligibility and/or very high premiums. As a result, the physicians and therapists seem to prescribe and set treatment goals that match the insurance plan, often short of the patient’s needs, especially for rehabilitation following stroke. They look to the survivor’s family, particularly the spouse/caregivers, like me, to pick up the torch and carry on.

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Caregivers need all the help we can get in navigating the confusing and often conflicting health, medical, and financial decisions required to support a family member with severe or chronic health conditions. My husband, Paul Berger, suffered a severe stroke from a ruptured aneurysm at the young age of 36. Our insurance covered his acute medical needs—brain surgery, hospital care, and even some rehabilitation services. Reimbursement ended when he was discharged from the rehab unit of the hospital, but he still needed—and could benefit from—long term speech, occupational and physical therapy.

The first decision was how to continue care. Should we try to coordinate outpatient care through the hospital, or through independent practitioners? Should we sacrifice our savings by spending a lot of money to extend his inpatient time at the hospital or transfer to another less costly one nearby? Should we sacrifice our time together and support of local family and friends to send him out of town to the state’s only comprehensive rehab facility run by the department of vocational rehabilitation services a few hours away?

In my professional life, and intellectually, I strongly supported community-based care. My gut told me that Paul needed to stay connected in town, and find a way to make it work from home. My heart didn’t want us to be separated. I became Paul’s “case coordinator” and orchestrated his weekly therapy schedule, periodic doctor’s visits, paperwork, prescriptions, equipment, home modifications, a daytime driver/companion/homework helper (since I continued to work full time), vocational rehab assessments, contact with his employer, and many of the chores Paul had handled—taking care of our finances, among others.

This was twenty years ago. At the time, AHRQ’s predecessor agency had the ambitious goal of writing clinical practice guidelines for major conditions affecting Medicare’s budget. Cataract surgery and treatment of benign prostate enlargement were at the top of the list. Post-stroke rehabilitation made it into the mix, and Paul and I testified during a public hearing. We also coordinated testimony by speech and physical therapists to talk about the need to clinically recognize that stroke survivors – like Paul – could continue to make progress many months, indeed years, after their stroke.

These guidelines are in the archives at AHRQ. A few years ago, the Department of Veterans Affairs developed a set of post-stroke rehabilitation guidelines. I have seldom, if ever seen these guidelines provided to survivors and their families.

I believe that for comparative effectiveness research (CER) to be successful, meaningful public outreach is needed to get the information into the hands of the patients and their families. CER needs to provide advice for real life decisions in real time. Studies must be designed with the patient in mind. Myrl Weinberg, President of the National Health Council, said it best:

“Comparative effectiveness research should supply us with good evidence and data about what works and what doesn’t. However, it should not be just about one product against another, or treatment process, or combination thereof. We also need to look at how different delivery systems can be compared.” www.nationalhealthcouncil.org

According to local news, PETA sent a letter to Penn Health System CEO Ralph Muller urging him to follow the lead of hospitals in England, reducing their carbon footprint and improving patient health by eliminating the availability of meat for patients, visitors and employees.

HUP is one of my local hospitals; a place where friends have been treated for cancers, and last month, for heart failure. It’s got a big footprint in this town and I’m glad it was there for my friends.

If my hospital got a letter, maybe yours did, too.

A hospital spokesperson says they’ve not received the letter, but if CEO Muller wants my reaction – here goes.

Please don’t. I have five reasons:

Reason #1: Personal experience. I’ve been a vegetarian for nearly 40 years. It was not an easy transition to make and not an easy lifestyle to live even though I was already – and still am – healthy, highly motivated and made the choice voluntarily.

• The physical impact of the transition took a year and was rough sledding. I can’t imagine asking a person as ill as those recently hospitalized to take that on.
• The skill challenge is substantial, entails difficult re-learning and supports for doing so today are only slightly better than decades ago. In 40 years of care by a number of different physicians – including some who were vegetarians themselves – it was only recently that one took the negative health consequences serious, explored – and found – an important deficiency in my diet, for example. Vegetarian cook books have beautiful covers and great recipes, but few covers show – and few recipes guide – adequate alternative protein sources for a lifetime.
• The genetic challenge cannot be ignored. Genetics play a role in nutritional needs and some people – the Dali Lama, for example – will never be able to successfully make the transition.
• The practical challenges are many. For anyone who travels, does not or cannot cook or readily control food choices, it’s hell. Airline, banquet and restaurant meal planners are not savvy about how to provide non-meat alternatives and I was eventually forced to return to fish for protein. Men I know who do physical labor say that despite their best efforts, vegetarian diets have not satisfied the physical demands that labor requires.
• Finally, it can complicate life with other chronic conditions. For me, it came five years ago as my Irish genetic ancestral predisposition to celiac showed up – as it can later in life. All that good whole grains if wheat, barley and rye I was eating were, in fact, killing me. I easily adjusted to this new condition for at-home meals, but it complicates an already challenging dietary life style in travel and social situations.

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Women and girls turn to domestic work as one of the few options available to them in order to provide for themselves and their families. Instead of guaranteeing their ability to work with dignity and free of violence, governments have systematically denied them key labor protections extended to other workers. Domestic workers, often making extraordinary sacrifices to support their families, are among the most exploited and abused workers in the world.

In New York State, there are 200,000 nannies, housekeepers and eldercare workers. They provide primary care including healthcare to many people. Virtually all of them are immigrants, the vast majority of them undocumented, and mostly women of color – which makes it all too easy for employers to exploit them, wittingly or not. Workers usually achieve rights through strength in numbers, but when you work in 200,000 places it’s hard to organize. They have never been protected by state labor laws. Things are getting worse. Labor advocacy groups are hearing from household workers that abuses are increasing as their employers face strain in their own lives. Increased violence, lay-offs, unjust firings or wage cuts and workers given additional responsibilities for the same pay.

Abuses against domestic workers, in private homes and hidden from the public eye, includes physical, psychological, and sexual abuse. In the worst situations, women and girls are trapped in situations of forced labor or have been trafficked into forced domestic work in conditions akin to slavery.

In New York State, both the Assembly and Senate Labor Committees have passed the Domestic Workers Bill of Rights out of committee. It’s up to the New York State legislature now to pass the Domestic Workers Bill of Rights (A1470/S2311).

The New York Domestic Workers Bill of Rights is the first legislation of its kind nationally and will set a precedent for labor standards for domestic workers around the country. Contact Domestic Workers United at http://www.domesticworkersunited.org and help make this happen in NYS so other states can follow in legislating laws to protect the millions of domestic workers nationally.

I looked at the outline of the new federal Stimulus package for pieces that would help people like me–caregivers and families of stroke survivors–something over and above what other families might receive in tax credits, etc. It’s always in the fine print. The only direct item I could find related to Unemployment Compensation:

If you lose your job, your former employer cannot try to get you disqualified from receiving unemployment benefits if “separation from employment…is for compelling family reasons…[including]: illness or disability of an immediate family member… The Labor Secretary would define immediate family member.” [Source: Conference Committee Report posted on Thomas.gov]

If you lose your job, there is some help for continuing health care under COBRA–particularly important if the caregiver’s insurance is covering the stroke survivor. Once you change insurers, it is almost impossible to get health insurance coverage for family members who have “pre-existing conditions” like stroke.

There are some additional funds for direct health care services through the Medicaid program and federally-supported community health centers. Also, additional funds for home-delivered food/nutrition services under the Administration on Aging programs, if you qualify.

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Note: While Disruptive Women in Healthcare is designed as a platform for women to present their ideas and concerns on today’s health issues, we occasionally allow posts from men who we feel will add to the discussion.  This guest post is from Peter Pitts, the President of the Center for Medicine in the Public Interest:

“President Bush leaves office with a health care legacy in bricks and mortar: he has doubled federal financing for community health centers, enabling the creation or expansion of 1,297 clinics in medically underserved areas.”

Says who? The New York Times. (Ergo, it must be true.) The article, “Expansion of Clinics Shapes a Bush Legacy.” All the news that’s fit to print? Well almost. It’s pretty amazing that the Gray Lady opted to leave out any mention of Part D in the President’s legacy. But maybe that article’s on the way.

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When the Congressional Budget Office released their “Health Budget Options” report last week, I eagerly scanned through the tome for recognition and support for caregivers—like myself—of people with disabilities or chronic health conditions. We’re mentioned in a parenthetical in Chapter 10 on Long Term Care:

“(Much long-term care is provided personally by the family and friends of elderly and disabled individuals.)”

Earlier in the chapter, CBO points out that patient/family out-of-pocket spending accounted for 20% of the total long term care spending. While one-fifth of spending is a lot, I think it probably underestimates the full value of direct care provided by the family, purchases of needed non-prescription and non-reimbursed medical equipment and supplies, and lost income by the caregiving family members.

CBO does make some oblique references to the magnitude of unaccounted-for care in its discussion of the pros and cons of adding home-based care incentives to Medicaid—the dreaded “out of the woodwork” factor—the number of people they cannot count who might come forward for services and wreck federal-state budgets. (more…)

The holidays are upon us, and we all know what that means for health issues — besides higher sugar and alcohol intake. That’s right, healthcare reform house parties! Check out the message from HHS Secretary nominee Tom Daschle below, and learn more about hosting or attending a healthcare community discussion over the holidays.

Meanwhile, four issues dominating discussions around the web this week are the future of the FDA, the new Nursing Home Compare rating system and web site, physicians and health IT, and of course, healthcare reform issues.

At the Center for Medicine in the Public Interest DrugWonks blog, Peter Pitts shared his recommendations for reforming the Food and Drug Administration:

I was honored when the Obama FDA transition team called and asked for my advice on how the incoming administration could make the agency a more robust and forward-looking regulatory instrument.
…
My suggested areas of focus are

1. A strong, science-based FDA
2. The Reagan/Udall Foundation — a Partnership of Unequals
3. Clarity vs. Ambiguity
4. Information Management
5. Food Safety and Security
6. Risk Communications
7. The Drug Label and the “Safe Use” of Drugs

…
There are, obviously, many, many other important issues … and I look forward to working with the transition team to ensure that the new commissioner can hit the ground running… And kudos to the Obama transition team for reaching out to a wide variety of groups.

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Having received the diagnosis of stage 4 pancreatic cancer dad decided that his remaining days should be oriented toward providing him comfort rather than treatment. I had not heard the term (actively dying) before dad was admitted into inpatient hospice. It was a brief stay following his collapse at home. It seemed that he would have preferred and felt safer and more secure to stay longer; perhaps it was the supportive listening and personal care and attention they provided. Or the three meals a day he could have (if only he had an appetite). Or the audiences who came into his room and listened to him conversing fluently in various languages.

But the staff said that he was not yet “actively dying” and there was little (no?) need for him to remain on the inpatient hospice. Yet seeing the sad and fearful look in his eyes, the physician quietly mentioned that perhaps he could remain on the unit one more night. So he stayed another night and then we finalized the plans and arrangements for him to go home with round the clock home health aides.

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