5 posts tagged “medications”

The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams


Share and Compare: The Launch of Two Medications

Posted February 10th, 2011 by

The launch of a new medication can be a very exciting event.  It can renew hope for a better future and provide proof of the billions spent on research every year.  It can also stimulate a lot of interesting conversation.

Or not.  We’ve learned from you that not every new medication warrants your attention and discussion.  What’s fascinating is learning which ones do and which ones don’t, and why.  We saw a recent example of this on PatientsLikeMe:

medsavb

(In this chart, the medications are called “A” and “B” so, as we continue to observe and research dialogue about these medications, we will not have influenced you in any way.)

This chart shows the volume of conversation about two new medications that were approved by the FDA to treat the same disease.  We studied the time immediately following FDA approval of each new medication to see whether or not patients were talking about them.  Since the drugs were approved at different points in time, we simply shifted them onto a single timeline for head-to-head comparison.

What a difference!  In the first month following FDA approval, you discussed Drug A 67 times but Drug B only 25 times.  Three months later, the difference grew to 402 discussions about Drug A to only 42 discussions about Drug B.

What caused this difference, and why is it so pronounced?  Let’s get the obvious stuff out of the way:

  • There was no major event or change on PatientsLikeMe during this time.
  • The number of patients on PatientsLikeMe was approximately the same when both new medications were approved.
  • PatientsLikeMe was not influencing conversation on either new medication.
  • Neither medication was available for use before month 3, long after the two lines in the chart had separated.
  • Similarly, the companies that developed these new medications did not begin their marketing efforts before month 3.

What this leaves is the new medications themselves.  There must be something different between Drug A and Drug B – could be side effects, could be efficacy, could be something else entirely – that drove the volume of conversation about Drug A only.  PatientsLikeMe will study this in greater detail to understand and illuminate the factors behind this phenomenon.

Why?  Because researchers need to know what you value in new medications.  By listening to your unmet needs, researchers can develop solutions to unsolved problems caused by your disease.  Wouldn’t that get you talking?

This is just another example among many of how you are selflessly giving back and helping advance medicine on PatientsLikeMe.

PatientsLikeMe member cfidyk