Category Archives: policy

When Silence Speaks Volumes

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I read this NYT piece, Are We Going to Let John Die? the other night and am only now just getting around to linking to it. It got me riled up, and like a successful Op-Ed piece should regardless of where we stand, it made me think about the issues involved.

From a research standpoint, health care reform remains on my mind these days. Right now, I’m looking at the civil rights movement, the early AIDS movement, and the disability movement and their influence on chronic illness. In terms of catalysts and goals for the chronic illness community, certainly health care reform is a significant issue. (Stay tuned, as I have a lot more to say about all of that…)

But when I move away from the books, journal articles, and interviews and look at daily life, and the recent content of this blog, I can see I’ve moved away from policy and reform a bit. This past spring and summer, it was hard not write about—from watching webinars that explored private versus public insurance to digesting the health care conversation with Bill Clinton to discussing the particular needs of patients with existing chronic illness, the subject was always fresh in my thoughts.

But lately, not so much. It’s still in the headlines, and I still read the articles. It’s still the topic of morning radio shows, and I still listen to NPR. Yet despite my cognizance of it, and its obvious importance to me as a patient, it hasn’t crept into my own titles and hasn’t been featured in my own writing.

The difference? Honestly, I think a lot of it has to do with the fact that this summer was relatively calm in terms of my health. I could manage the juggling act and stay on top of things with enough mental energy to engage in the dynamic conversation. Since September, I’ve spent 6-7 weeks acutely ill. Now, I am used to this cycle. If you’ve read this blog with any regularity, you’re probably used to it, too. It’s just the way things are when you’re blessed with dodgy lungs and a pathetic immune system and other medical complications right now.

On the positive side, I can say the infections haven’t been as bad or lingered quite as long as they normally would because of the very proactive, very aggressive preventive protocol I have been following since last March.

I’m a walking risk/benefits analysis, really.

While the cycle is all too familiar, what distinguishes it right now is that my workload has never been more intense. When infections sap my energy and consume my already scant hours of sleep, it hits me even harder. Or, to be more blunt, when I am sick it takes every ounce of energy and focus I have to just make it work, to get through the day and accomplish the tasks I need to in order to stay on track.

When I am sick, I fall off Twitter. I become a comments slacker on other blogs, my response time to e-mails takes a notable dive, and I beg off pretty much every commitment. I enter the Black Hole where the only things I can focus on are trying to get air and not falling behind in work. I read articles without comment, I skim headlines without linking.

In short, at times I am too busy being sick to contribute in any meaningful way to the conversation of the very health care reform that could define my patient experience.

Ironic? No, it’s inevitable. It’s life with chronic illness.

I get sucked into the Black Hole of silence even with a ton of local family and friend support, with an amazing husband, a relatively flexible career, a world-class hospital 10 minutes away, a healthy stubborn streak, and twenty-nine years of experience living with illness. Oh, and with very good health insurance.

Scary, when you consider the millions who cannot say the same.

(Also inevitable, rather than ironic: what keeping that wonderful health insurance has cost me so dearly in so many other ways, and how precarious it feels nonetheless.)

I guess I can tell I’m starting to improve. The ability to be riled up is always an encouraging sign.

Health Reform Updates

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It’s another big couple of weeks in the push for health reform. During his press conference today, President Obama said that health care reform is not a luxury but a necessity. He clarified again that those with private insurance who are happy with it can keep it, but also made it clear as forcefully as I’ve heard him that unless major reform happens, they won’t be able to afford those plans in years to come.

As the lead up to Wednesday night’s “Questions for the President: Prescription for America” special on ABC continues, I saw Obama’s emphasis on containing cost in today’s press conference telling. After all, last week was a tough one for the push for reform, with many fearing the $1 to $1.6 trillion price tag associated with proposed bills would spell the end.

In the middle of the speculation about health reform’s demise and sticker shock came the announcement that Senator Max Baucus (chairman of the Senate Finance Committee) and the country’s pharmaceutical companies reached an agreement to help close the coverage gap under Medicare’s Part D prescription drug program, which enrolls some 27 million elderly patients. Prior to this agreement, Medicare recipients paid the full price of brand-name drugs once they reached $2,200 in medication expenses and until they hit an upper limit of $5,100—an expensive and problematic “doughnut hole.” In a press release from the White House, President Obama said “The existence of this gap in coverage has been a continuing injustice that has placed a great burden on many seniors. This deal will provide significant relief from that burden for millions of American seniors.”

You can watch President Obama discussing the prescription drug agreement here:

The agreement will result in an estimated $80 billion in savings over the next several years. According to PhRMA, “Under this proposed new legislative program – which represents the first important step in health care reform – America’s pharmaceutical research and biotechnology companies have agreed to help close the gap in coverage. Specifically, companies will provide a 50 percent discount to most beneficiaries on brand-name medicines covered by a patient’s Part D plan when purchased in the coverage gap.”

The savings are undoubtedly significant for the seniors struggling to pay for bills. They are small relative to the overall price tag of health reform, but a confident, emphatic stance from the Obama administration in the midst of all of this speculation is a good sign right now for anyone invested (and really at this point who isn’t, despite which side you might stand on?) in health reform.

I won’t see tomorrow night’s program—I’ll be in a plane, trying really hard not to catch anything since I do that like it’s my job—but I look forward to reading about it. As recent events illustrate, it should be an…interesting evening.

Talking Health Insurance

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So a few days ago I watched the Talking Health webcast on health insurance, presented by the Association of Health Care Journlists, The Commonwealth Fund, and the CUNY Graduate School of Journalism.

I listened both as a journalist interested in how to cover this controversial issue, as well as patient with an obvious vested interested in health insurance reform, and the discussion did not disappoint on either count.

For the purpose of this post, I’ve decided to highlight some of the points/questions I think matter most to readers and patients with chronic illness—after all, a key to managing chronic diseases and preventing disease progression is having health insurance that covers medications and appropriate treatment therapies. And, as the NYT’s Reed Abelson, one of the four panelists, pointed out in talking about stakeholders in this debate, patients are the most obvious source but are not well represented.

Do we really know what the difference between public and private insurance is? While some people do, and they usually equate private with better care when they do, many consumers aren’t sure what the public option really entails. According to panelist Cathy Schoen, senior VP at The Commonwealth Fund, context is important here. She says the type of plan usually mentioned in national reform would offer for the first time to people under 65 a plan that is similar to Medicare, one that could compete with private care. The goal of this type of plan is to provide better access and control costs, and consumers would have the choice to keep their existing (private) insurance or choose this new public option. The public option would be standardized across the country and wouldn’t change much over time.

Bruce Bullen, COO of Harvard Pilgrim, a nonprofit managed health care organization in New England, points out some of the pluses and minuses with public vs private insurance: For example, private insurance companies focus on customer service, network building with doctors, and are inherently local/regional, while public ones are more standardized, easily understood, more regulated and perceived to be more equitable.

Other benefits and drawbacks we should consider? The public plan would offer lower premiums, which is attractive to consumers. At the end of the day, we need to control soaring health care costs; advocates of the public plan point to its purchasing power as an advantage, since it would be purchasing for such a large population. Its economies of scale and lack of a need to market itself are also positives. Since healthier competition usually means cost would come down, the public plan could potentially be cheaper. As we know, private sector rates are higher ($12,600 is the avg family premium), but Bullen contends that well-organized plans like HPHC have such mechanisms where they can be quite competitive with public rates.

But is it possible for private plans to compete with public options? At 20-25 percent cheaper than private plans, Bullen says probably not, pointing out that these savings do not mean the public plan would control health care costs. If we’re making the comparison to a Medicare-type system for people under 65, consider that providers often can’t live on what Medicare pays so they move to private insurers for competitive rates. The cost and quality problems that are so widespread now would continue. Also, consider if providers are asked to sign on for less, would they? Or would the government mandate participation?

Whether through a public plan or a private one, Cathy Schoen asserts that we need to be paying for care differently. To do this, we should harness the technology we have but do so with clear outcomes in mind and in the right circumstances. Appropriate technology requires more incentives, which we don’t have right now. In essence, we need to ask: Is it better, and do we have to pay as much for it?

More thoughts on public plans:The term public plan means different things to different people. Some key variations within that term include a federally sponsored new plan to market or a plan that piggybacks with Medicare. It’s the sponsorship that is critical. Medicare uses private claims payers and pools risk, and one of the biggest fears and strengths of the public plan is that it pools risks.

What can government do if doctors refuse to treat people with the public option? Cathy Schoen agrees this is a critical issue, especially since it’s known that Medicare pays far too little for primary care. The public plan would have to come in with competitive rates and if everyone was insured rates between the two wouldn’t be as different because right now we’re already paying for those who don’t have care at all.

Would the public plan become dumping ground for sickest people? Schoen says it is a risk in a reformed insurance market where no one could be turned away or told they are too sick. Things like age variation where a 50-year-old could say “don’t ask me about health status just sign me up” would help combat this, but we still have to worry about risk selection; as soon as you have competing plans, no matter the name of them, this is still a concern. The way to address it is by rewarding plans.

How will public plans affect the innovation US is known for? According to Bullen, it will negatively impact innovation. One of hallmarks of private care is responding to consumer needs and giving answers that work. That’s a big tradeoff—public plans have other strengths, like standardization and equity.

Anyway, these are just some summarized snippets I felt brought up compelling points on both sides. While it’s a huge issue and has everyone talking, there are so many details, variables, and benefits/drawbacks involved in any type of reform that it’s helpful to hear some of them explained in accessible terms. The terms “public option” or “universal health care” spark so many competing emotions and definitions, from some people imagining hybrid plan like we have here in Massachusetts to conjuring up a single-payer system more comparable to Canada or the UK. For what it’s worth, I found the discussion of a public plan similar to Medicare but for younger people a helpful way to frame the inevitable comparisons between private and public insurance plans.

(As an aside, the second segment with the LAT’s Noem Levy and Reed Abelson was great, so if you’re a writer wondering how to find sources for this and what other questions to consider, definitely check it out.)

Disclosing Physcians’ Gifts: Analysis, Articles, and An Interview

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As a patient, patient blogger, and all around news junkie, I have to admit when I first heard about health care reform legislation in Massachusetts aimed at reducing costs this past March, I was more than interested. When I learned that part of this legislation involved a ban on gifts to physicians from pharmaceutical companies, I was even more interested. Reduce costs and limit potential conflicts of interest? My heart trilled just a bit. What’s not to love?

But if a recent flurry of headlines about the controversy and heated opinions are any indication, newly modified legislation that makes public any gift of $50 or more a physician receives from a pharmaceutical or other company is anything but simple or obvious—especially in a state like Massachusetts, where the life sciences sector is a huge part of the economy and academic research centers and hospitals are integral.

To wit, an editorial in the Boston Globe urges Governor Deval Patrick to stand firm on the bill, writing that “the state is right to make sure doctors make medication decisions based on merits, and not meals.” At the same time, an op-ed penned by leaders from the biotech and medical device industries outlines their case for why the legislation “will absolutely affect whether companies continue to choose our world-class hospitals for this important clinical work.” Read through them for more background; there’s a lot to digest.

It’s certainly a good time to be a health news junkie in Boston, no?

As always, what I’m interested in how these issues will affect our daily lives. As a patient with rare diseases who knows firsthand how important research and development are to patient outcomes, how could I not be curious? After all, clinical trials are where the developments we count on come from, and if this legislation will have a negative impact on clinical trials, as opponents claim, I’m certainly paying attention.

It makes plenty of sense to me why legislators who want to reform health care and contain costs would support this bill, and it makes a lot of sense to me why patients would care about what their doctors are getting from the companies that manufacture the medications and medical devices that treat them. Patients want the treatments that are best for them, and those are not necessarily the ones that have the largest marketing and promotions budget. Transparency is a hot-button issue in health care right now, and with good reason in this context.

It’s important to me I understand where the positions both sides are taking originate, and clearly it’s not enough to pit this in terms of disclosing physicians’ gifts or not, or making comments about sandwiches and pens. To that end, I chatted today with Dr. David Charles, chairman of the Alliance for Patient Access, a non-profit organization that teaches physicians how to advocate to ensure patients have access to appropriate therapies, to see why there is such opposition to this legislation.

(Since it’s all about disclosure, the AfPA receives funding from industry trade groups).

According to Dr. Charles, a fundamental problem with this portion of the legislation is that it has the potential to set up a “complete misunderstanding” of the relationship between universities, physicians, and the companies (pharmaceutical, medical devices, biologics, etc) that support these clinical trials—and he considers this partnership imperative if we’re to continue seeing progress in understanding and treating diseases like multiple sclerosis or Alzheimer’s, to name but a few.

“This is a step backwards, not forwards,” he says.

Since the information published on the state Web site would mention the physician’s name and the money he/she received that went above $50—and not how the money was used—he fears the flow of funding could be misconstrued. This also goes along with other claims (see links above) that this kind of disclosure would make physicians less likely to participate in clinical trials, meaning companies would then invest in them in other places.

For example, money that goes to the university to help support clinical trials would look like it was simply being paid to a physician, not the university and all the staff involved in the trial. Or, money allocated for a physician to teach other physicians how to use cutting edge technology and devices that improve patient care would not be identified as such. Dr. Charles worries this “disclosure without context” could make what are completely appropriate and essential practices seem inappropriate.

He also had some interesting things to say about the writing of prescriptions, which is often one of the first criticisms patients and policy experts point to when discussing conflicts of interest and gifts from pharmaceutical companies. “Writing prescriptions is not the issue at hand,” he says. Rather, helping physicians understand when to select certain medications—what the side effects are, what drugs they work the best with and which ones they shouldn’t be prescribed with, etc—is the key issue. He views educating physicians about these variables, much like training physicians on how to use new equipment and other forms of continuing medical information, as both completely appropriate and essential for the best care for patients.

So patients (and readers from all points of view), I’m interested in what you think about all of this. As you can see from the media blitz on all sides the debate wages on, but the bottom line is, what is best for the patient? Do the potential risks to the partnership so important to clinical trials outweigh the benefits of the concept of transparency so many of us hold as paramount these days? While we wait for the Governor’s response, I’m eager for yours.

UPDATE, 8/11: Here’s an update article from today’s Globe that discusses the health policy Gov. Deval Patrick signed into law. Looks like transparency wins–or at least gets a big push! Check out the article; there’s a lot of good info the primary care physician problem I’ve written about before.

Education, Disrupted: An Update

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This past May I wrote about the challenges college students with chronic illness face in terms of achieving their goals and staying enrolled. I also wrote about the great work the Chronic Illness Initiative at DePaul University is doing to help students overcome these challenges.

As an update to that post, I’m happy to pass along this news story about Michelle’s Law, a bill passed recently that, according to the Boston Globe “would allow allow seriously ill or injured college students to take up to one year of medical leave without losing their health insurance.”

It’s sadly ironic that in cases like this, students with serious conditions who are trying to treat their illnesses or recover are often penalized by losing the very insurance they need to survive. That’s why this legislation is exciting, promising, and…logical.

Who would have guessed it?

Education, Disrupted

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This is how this post should have started:

“Today I participated in the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s
Chronic Illness Initiative.”

Instead, this is the real beginning:

Today I was supposed to be in Chicago speaking at the fourth annual symposium on chronic illness and postsecondary education at DePaul University’s Chronic Illness Initiative.

Instead, I’m lying prone on the couch and various illness paraphernalia surrounds me. I’m somewhat confident I’ve skirted a hospitalization, but still wary of the possibility.

Um, yes. The speaker who was supposed to train faculty on handling students with chronic illness and offer strategies to chronically ill college students is a no-show because she came down with a particularly vicious respiratory infection. My life is nothing if not dependably ironic, no?

I don’t have enough lung capacity to do public speaking right now, but I can type. So instead of the presentations I planned to deliver, let’s see if this disruption can yield something of value anyway.

First off, the
Chronic Illness Initiative (CII) at DePaul is a truly amazing program. I first learned of it when researching a chapter in my book and was so impressed with the scope and mission of the program. In summary, it allows chronically ill students to get their degree at their own pace. It also serves as a liaison between students and faculty; educates faculty and staff about chronic illness; and assists students in planning viable schedules, among many other vital services.

Why is the CII so forward-thinking and necessary? Like the workplace, academia is not always equipped to handle the particular challenges of chronic illness. In the classroom, these challenges include prolonged absences, seasonal fluctuations in illness, unpredictable illness flares, etc.

Sometimes, students are lumped in with offices that cater to students with learning disabilities or physical disabilities, populations with very different needs than those of students with “invisible” chronic illnesses. In other places, students and instructors are left to devise ad hoc policies on their own which is also problematic, especially if the particular manifestations of a student’s illness are not understood.

I spent fours years in the trenches trying to balance serious chronic illness with a challenging college course load and GPA worries. I had faculty and administrators who learned with me and worked with me, and I made it through. I know firsthand how important disease education, communication, and accountability are to this dynamic, and I know that if you advocate for your education you can succeed without jeopardizing your health.

But I also know not every student has such good experiences. And I know that it doesn’t need to be as hard as it is for so many, or even as hard as it was for me. That’s where the CII and the learning objectives of this year’s symposium come in—from the benefits of forming a coalition between medical professionals and administrators to understanding the disabling nature of fatigue to identifying the problems students face when transitioning to independent care of their conditions, this year’s meeting promises to cover many timely and necessary issues.

The mission and goals of the CII are hopefully ones that in time will be replicated on college campuses throughout the country. Until there are more universal policies regarding issues like illness disclosure, absences due to chronic illness, or flexibility with course load and pacing, chronic illness will pose a greater obstacle to higher education than it needs to be.

I wish I was there soaking it all up and learning from my colleagues and from the students. But I’m trying to roll with it and accept the unpredictability of chronic illness, something the students of the CII know doesn’t defer to tests or deadlines—or, in my case, a symposium, either.

Policy and Protest

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I’ll start with the preface that I know I am fortunate to have health insurance. It isn’t the best insurance out there but it isn’t the worst and relatively speaking, I know I don’t have much right to complain.

But.

Obviously when we’re talking about health insurance you know there’s a “but,” right?

I’ve long since accepted that the glory days of my past insurance life are over, the days when my Daily Chest Physiotherapy was covered, you know, daily, and routine doctor visits didn’t cost hundreds of dollars. I use Express Pay for my many refills and pretend not to notice what the amount due actually is, figuring I’ll just deal with the full blast at tax time. I take what I can get.

Still, it’s impossible for me not to get fired up at the state of healthcare, at the exorbitant cost of heavily marketed blockbuster “me-too” drugs, at the futile feeling that preventative care is the most important thing we can be doing but is still not a priority to many. I will return to this line of thought in one moment, rest assured!

Recently, I had my own minor little indignation. I picked up my refills and a generic prescription for allergies/sinus congestion I’ve had since 1996 cost 10 times what it did last month. Now that was an Express Pay bill I couldn’t ignore! I made many phone calls to the insurance company and the prescription benefit people and actually ended up conferencing both parties since their knowledge of what the other was doing was so woefully inaccurate. I found out that as of January 1, the medication was no longer covered, despite the fact that we pay extra each month for “premium” prescription coverage and despite the fact that drug is listed on the company website as the “preferred drug.”

The real kicker? No other drug in that whole family is now covered. At all. Huh? Now, I realize that of all my meds it’s the least serious one. It’s not like they took away my thyroid medicine or my heavy duty antibiotics or my refined nebulizer medications. The world won’t end. But, as I said to the woman on the phone, it doesn’t make much sense. Keeping my sinuses clear means less gunk spreads to my lungs and lodges there, which in turn means less need for massively expensive antibiotics and even more expensive hospital trips.

Go figure.

Anyway, just as I was stewing away at the arbitrary and exhaustive ban of all medicines relating to sinus congestion, I checked my inbox. It just happened to be full of links and resources relevant to my position here—and yes, it really happened this way, as contrived as the timing may seem.

So, back to my main point here: Information is power. For all of you who feel frustrated, who are nursing your own indignations and outrages, who want to know what’s really going on with your healthcare and what you can do about it, I offer up the following suggestions:

PharmedOut is an independent, publicly funded project whose goal is to empower physicians to recognize and counteract inappropriate pharmaceutical promotion. Last week they released publicly a slideshow called “The Physician-Pharma Relationship.” Check out the press release and slideshow here.

Not on the Center for Science in the Public Interest’s e-mail list? Click here to check out the site and sign up to get regular summaries of what’s going on in the world of science and health delivered to your inbox. From disclosing financial conflicts of interest in research studies that affect your life to the latest analysis of FDA policy changes and announcements, the Integrity in Science Watch e-mail is a treasure trove of the kind of information you need to have but can’t always get to easily.

It’s no secret that healthcare is one of the most pressing political issues out there. Election year scrutiny got you thinking? Visit the Partnership To Fight Chronic Disease, a great resource that is a “national coalition of patients, providers, community organizations, business and labor groups and health policy experts, committed to raising awareness of policies and practices that save lives and reduce health costs through more effective prevention and management of chronic disease.”

As for me, I’m planning my next phone call to try and remedy this pill situation. Luckily I’ve got plenty to read while I wait on hold.