Tag Archives: chronic disease

The Cost of a Cure: What’s the Right Price?

Recently, two significant pharmaceutical breakthroughs have resulted in a renewed debate about the costs of drug therapy. In the last year, a new drug class for the treatment of Hepatitis C has been released by two different manufacturers and has been found to cure a once incurable chronic liver disease for nearly 90% of patients who are treated with a full course of therapy. The drug appears to be safe and highly effective—however, the cost of a curative course of therapy is nearly 80K dollars. As you might imaging, there are already barriers to access for many patients including those treated in the Veterans’ Affairs (VA) system as well as those on government based insurance programs such as Medicaid.

In the last several months, another remarkable, potentially “game changing” drug has been approved and released into the market. These drugs, made by Regeneron and Sanofi, are intended for patients who do not achieve adequate cholesterol reduction with standard statin therapy (the current standard of care).   According to some analyses, these drugs, when used in the appropriate patient population, may result in the prevention of thousands of cardiovascular related deaths. However, just as seen with the new hepatitis C drugs, the price tag for therapy is exorbitant—nearly 15K dollars annually. With the Hepatitis C drug, therapy is only required for approximately 12 weeks and then is no longer needed—with the cholesterol drug, the therapy will most likely be lifelong.

This month a study examining the cost effectiveness of these new cholesterol drug has been published and concluded that the drugs are far over-priced (nearly 3 fold) for the benefit that they produce. Based on a pure economic analysis, researchers concluded that the drugs should actually cost between 3K and 4K dollars annually rather than the current 15K price tag.

Did Healthcare Reform Forget Big Pharma?

The purpose of the Affordable Care Act (ACA) (as touted by supporting politicians and its authors) is to make health care accessible and affordable to all Americans. Certainly this is a noble goal and one that we should continue to strive to achieve. However, the legislation has failed to meet this mark. While addressing physician reimbursement and clinical behaviors (and limiting choice and physician autonomy), the ACA has done nothing to regulate the high price of pharmaceuticals. Big pharma is allowed to charge exorbitant prices (whatever the market will bear) without regulation. It is clear that pharmaceuticals must reclaim their research and development investments and make a profit—however, many of these drugs are far overpriced and pricetags are simply designed to exploit the system and maximize corporate (and CEO profits). IN addition, many of the most expensive drugs in the US are sold overseas and in Canada at a fraction of the cost. This seems to me to be clear evidence of the pharmaceutical industry taking full advantage of the inherent wealth in the US today.

However, Would it not follow that if we placed limits on the prices of new drugs and paid “fair and equitable” charges, that healthcare costs would significantly decline?

It seems our politicians have sought to attack the problem from a few angles and have failed to address other significant sources of excessive healthcare spending. While reimbursement for physicians and physician groups are set clearly in the crosshairs of the ACA, it appears industry and litigators are not even on the radar. There is hope—legislation is being introduced that will allow legal purchase of drugs from Canada for Americans. In addition, pharmaceutical companies would be required to disclose what they charge for the same drugs in other countries. I believe this is a step in the right direction. Lets continue to innovate and provide new therapies for ALL Americans. But lets do it in a way that is cost effective. The latest studies make it clear that these drugs are overpriced. We must find a way to negotiate a fair and reasonable price that promotes and rewards innovation BUT also provides access to the newest and most effective therapies for all who need it.

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Sharing Bad News or Keeping Secrets—How Physician Communication Impacts Patients and Families

Doctors and Patients bond over time. Information exchange, education and sharing of expertise are critical activities that add to the effective practice of medicine. Delivering bad news is unfortunately an unpleasant part of a physician’s job. Honesty, empathy and clear communication are essential to delivering news to patients and their families—even when the news is unpleasant or unexpected. While communication is an integral part of the practice of medicine, not all healthcare providers are able to relay information or test results in a way that is easily digested and processed by patients. Some physicians may avoid delivering bad news altogether—often keeping patients in the dark. While a paternalistic approach to medicine was accepted as the status quo for physician behavior in the 1950s, patients now expect to play a more active role in their own care. Patients have a right to demand data and understand why their healthcare providers make particular diagnostic and treatment decisions.

Recently, a disturbing report indicated that in a database of Medicare patients who were newly diagnosed with Alzheimer’s disease, only 45% were informed of their diagnosis by their physician. While shocking, these statistics mirror the way in which cancer diagnoses were handled in the 1950s with many doctors choosing not to tell patients about a devastating health problem. With the advent of better cancer therapies and improved outcomes, now we see than nearly 95% of all patients are informed of their cancer diagnosis by their physician.

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How can this be? Why would a physician NOT tell a patient about a potentially life changing diagnosis?

I think that there are many reasons for this finding in Alzheimer’s disease and that we must address these issues in order to provide ethical and timely care to our patients.

  1. Time constraints: Electronic documentation requirements and non-clinical duties allow for less time spent with each patient. In order to deliver bad news such as a terminal diagnosis, a responsible physician must not only spend time carefully delivering a clear message but must also be available to handle the reaction and questions that will inevitably follow. Many physicians may avoid discussing difficult issues due to the lack of time available to help the patient and family process a diagnosis. We must create ways to diminish the administrative burden on physicians and free them up to do more of what they do best—care for patients. More reasonable and meaningful documentation requirements must be brought forward. Currently, many physicians spend far more time typing on a computer rather than interacting in a meaningful way with patients during their office visits. Eye contact, human interaction and empathy are becoming more of a rarity in the exam room. This certainly limits the effective delivery of bad (or good) news to patients. Priority MUST be placed on actual care rather than the computer mandated documentation of said “care”.
  2. Dwindling Long-Term Doctor Patient Relationships: Networks of hospitals, providers and healthcare systems have significantly disrupted traditional referral patterns and long-term care plans. Many patients who have been enrolled in the ACA exchanges are now being told that they cannot see their previous providers. Many physicians (even in states such as California) are opting out of the Obamacare insurances due to extremely low reimbursement rates. Patients may be diagnosed with a significant life changing illness such as Alzheimer’s disease early in their relationship with a brand new healthcare provider. When a new physician provides a patient with bad news—of a life-changing diagnosis that will severely limit their life expectancy as well as quality of life—patients often have difficulty interpreting these results. Healthcare providers that have no relationship with a patient or family are at an extreme disadvantage when delivering negative healthcare news. Long-term doctor patient relationships allow physicians to have a better understanding of the patient, their values and their family dynamics. This “insider knowledge” can help facilitate difficult discussions in the exam room.
  3. Lack of effective therapies to treat the disease: No physician likes to deliver bad news. No doctor wants to admit “defeat” at the hands of disease. It is often the case where some healthcare providers will not disclose some aspects of a diagnosis if there are no effective treatments. I firmly disagree with this practice of withholding relevant information as I believe that every patient has the right to know what they may be facing—many will make significant life choices if they know they have a progressively debilitating disease such as Alzheimer’s disease. In the 1950s, many patients were not told about terminal cancer diagnoses due to the lack of effective treatments. However, medicine is no longer paternalistic—we must engage and involve our patients in every decision.
  4. Lack of Physician communication education: As Medical Students we are often overwhelmed with facts to memorize and little attention is given to teaching students how to effectively interact with patients as well as colleagues. Mock interviews with post interview feedback should be a part of pre clinical training for physicians. We must incorporate lectures on grief and the grieving process into the first year of medical school. Making connections with patients must be a priority for physicians in the future—we must equip trainees with the tools they need for success.  Leaders distinguish themselves by the way in which they share bad news.  According to Forbes magazine the critical components of sharing bad news include–accuracy of communication, taking responsibility for the situation, listening, and telling people what you will do next.

What’s next?

As with most things in medicine, change often occurs “around” healthcare providers without direct physician input. Physicians are appropriately focused on providing excellent care and connecting with patients while politicians and economists craft the future of medicine. The issues with lack of communication of negative findings with patients MUST be addressed. Patients have a right to their own data and have a right to know both significant and insignificant findings. In order to avoid situations where patients are not fully informed about their medical condition, we must continue to remain focused on the patient—even if it means that other clerical obligations are left unattended.

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Suffering in Silence: When Doctors Fail to Ask The Right Questions

Let me start by saying that I am by no means an expert in Medical Oncology and I have great respect for what my colleagues in this field are able to do for their patients and their families.  From my earliest days of Internal Medicine training at the University of Virginia, I can remember the oncologists as being some of the most caring and compassionate physicians around.  However, recently I came across a remarkable article in the New York Times that gave me great pause.  Author Suleika Jaouad has been chronicling her battle with cancer in a regular blog.  In this particular entry, she describes her experience with dealing with the sexual and reproductive side effects of her cancer and its therapy.  Ms Jaouad brings to light the fact that often physicians fail to ask the right questions at the right time of the patient in their care.  It is not for lack of attention or concern but more often due to a laser-like focus on the task at hand–battling the disease.  In addition, in medicine today, most physicians (other than urologists and gynecologists) do a poor job of discussing sexuality and sexual side effects of diseases or treatments.  In her blog, Ms Jaouad remarks that she found it very difficult to discuss sexuality related issues with her doctors or staff–the subject never really came up.  Thankfully, she had a support group of peers to turn to.

As a specialty physician, I often find myself focused on one disease or one aspect of my patients’ health.  Sometimes, patients are crying out for help and we do not even hear them because we are wearing “blinders” as if we are thoroughbreds in the Kentucky derby. Too many times, we see the finish line of the race and forget to provide the necessary encouragement (and support) to the patient along the way.  Certainly there are guidelines and proven therapies for specific diseases–we all strive to provide the very best care.  But, as evidenced by Ms Jaouad’s blog, we sometimes fall short simply because we “forget to ask”. Or worse, we fail to pause and provide an environment conducive to TWO WAY communication when interacting with our patients.

So, what is the lesson here?  I think that for starters, it is imperative to LISTEN to our patients.  I have blogged many times about the importance of developing a positive and productive doctor patient relationship.  As we all know from our personal lives, one of the most important aspects of a relationship is effective two way communication.  This is not always easy–patients may be intimidated by their disease or by their doctor–Doctors may be so preoccupied with their agenda for the day that they forget to pause for questions.  Either way, the opportunity for questions and attending to the needs that are important at the moment to the patient are lost.  A patient with a chronic or debilitating illness may have concerns that may not seem relevant to the overall treatment plan or disease battle to us as caregivers.  However,  addressing these concerns may make an enormous difference in the long run to the human being suffering with the disease.  As physicians, we are now under increased pressures for productivity and are asked to do more with less time–But we must remember to take a deep breath, and focus on what really matters.  More than anything, our patients need our care, compassion and concern.

I think that as healthcare professionals we must make it part of our routine to spend some time each visit making sure that the patient feels comfortable asking questions.  In order to facilitate this type of interaction AND ensure that our treatment goals are also met for the visit, we must make a real effort to incorporate time for questions into every visit.  In addition, we must remember that sexuality and sexual side effects of diseases and the treatments we prescribe are real and can have significant negative impacts.  We must do a better job of educating ourselves about these side effects and make a concerted effort to discuss them with our patients during routine office visits.  Although initial discussions may be a bit awkward for doctor or patient, it is important to open the door and invite communication to improve the lives of our patients who suffer with chronic disease.

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