By Grace Bender. Everyone needs to be their own healthcare advocate.  I realized this when I noticed my mother struggling to manage the numerous medications she was taking. With so many prescriptions and over-the counter medications to keep track of, I was concerned about her taking the correct dosages at the correct times and following all the various instructions.

So I decided to create a medication chart that allowed her to track her medications more easily and ensure she was taking them correctly. We then showed the chart to each of her physicians and pharmacist.  The result was a dramatic change in my mother’s medication regimen.  The chart enabled her physicians to view what they and all her other doctors were prescribing. They soon realized just how many medications she was on and that some medications were actually counteracting others.  Many prescriptions were changed or stopped and over time she went from taking 16 medications to nine.

Adverse events related to medications are the fourth leading cause of death in U.S. for patients over the age of 65.  This startling statistic led me into the patient-advocate role.  Since that time my own experiences have continued to reinforce my belief that individuals need to take control of their health and work to make sure all their healthcare providers, caregivers, and/or family members are working together as a team.

After being faced with several health scares in 2008, I decided to have an MRI breast scan for peace of mind.  I had learned that the scan was the best diagnostic and screening tool for women with large, dense breasts and a family history of breast cancer.  Since I had a mammogram six months earlier, which was normal, my physician did not think the MRI was necessary.  However, I decided to have one to be certain I was breast-cancer free.  To everyone’s surprise, the scan revealed three spots that biopsies confirmed to be multifocal breast cancer.  Since I knew my own body and had educated myself about available screenings, I may have saved my life because I was told a mammogram might have taken years to pick up the spots. This may not be the right course for every woman, but everyone should know that this tool exists. (more…)

Tomorrow, Thursday, August 5^th from 12:00pm – 1:00pm EST Disruptive Women Trisha Torrey, Guide to Patent Empowerment, About.com  (http://patients.about.com/) and quoted in this month’s “O” Magazine, and Regina Holliday http://reginaholliday.blogspot.com/) , medical advocate and muralist, painter of “73 cents,” a depiction of challenges she faced to acquire her late husband’s medical records as he struggled with cancer (“73 Cents” also cover of British Medical Journal 9/09) will be featured guests on the Disruptive Women in Health Care and Real Women on Health Radio! blog talk radio show. The topic for the show is “Patient Empowerment: How to be Your Own Best Advocate.” 

There are two ways to listen and/or participate in what will be fascinating conversations — listen online at http://www.blogtalkradio.com/realwomenonhealth or call toll-free (646) 929-2625.

And speaking of Patient Advocacy and Empowerment, Disruptive Women in Health Care is working on its next e-book which is all about Patient Advocacy.  Start looking for posts later this month.

If you have stories or tips to share on this subject, we invite you to send them in.

By Robin Strongin. When the Obama Administration announced the new regulations expanding preventive care, ensuring that essential screenings and tests would be covered without co-pays for deductibles, my first thought was that this may be one of the most important provisions of health reform in terms of improving the overall health and well-being of the American people.

My second thought concerned forests, falling trees and sounds we may or may not hear.

The history of health care in the United States is, in large part, defined by sound policies and vital programs that are not accompanied by effective outreach to  the patients and consumers who have the most to gain from these innovations.  Thus, new provisions expanding preventive coverage have the potential to be like the proverbial tree falling in an empty forest.  If we don’t do a good job letting people know these services are more accessible, will they take advantage of them?

I think of the millions of people who are eligible for Medicaid or for Children’s Health Insurance Programs who aren’t enrolled.

I think of the widespread confusion that existed in the early days of the Medicare Part D prescription drug program until several organizations stepped in to conduct coast-to-coast information sessions with seniors.

And I think of the story that just appeared in the New York Times (http://www.nytimes.com/2010/07/15/health/15chen.html?_r=2&ref=health&pagewanted=print) regarding the growth in usage of the “medical home” model for health care.  (I prefer the term health home, but that’s for another post.) As Dr. Pauine Chen pointed out in the Times, empirical evidence is showing that the medical/health home – shorthand for greater care coordination between the patient’s primary care physician, specialists and other health care professionals – is working.  A demonstration project sponsored by the American Academy of Family Physicians showed that the new model was improving quality of care, efficiency of operations and physicians’ job satisfaction.

But patients hated it, because no one bothered explaining to them why their one-on-one relationship with their health provider was being replaced by a one-in-three or one-in-four relationship with multiple providers, even if it resulted in better care.

And, thus, does this new innovation in health care delivery fall within the proud history of U.S. health care in which great ideas are not linked with communication to the patient.

As health reform is implemented, both the public and private sectors need to do better, beginning with outreach to let people know about the new preventive care coverage and, more importantly, to ensure that Medicaid expansion and the new subsidies to help make private health insurance more affordable affect the people for whom they are intended.

By Joy Burwell. On Monday, June 7th Health 2.0 took over Washington DC and yesterday the excitement continued with a Disruptive Women in Health Care breakfast. The breakfast would not have been possible without the generous sponsorship of Manatt and the support of The Hill. A huge thank you to this morning’s engaging panelists: Fran McMahon, Publisher of The Hill; Indu Subaiya, Co-Founder Health 2.0; Julie Murchinson, Manatt Health Solutions; Alexandra Drane, Founder and President, Eliza; Marlene Beggelman, Founder, Enhanced Medical Decisions and Linda Von Schweber, Co-Founder Surveyor Health. Robin Strongin, Creator of the Disruptive Women in Health Care blog moderated the program. Below is a very brief summary of the discussions; video and photographs of the breakfast will be posted soon.

L to R: Julie Murchinson, Robin Strongin, Indu Subaiya, Fran McMahon

You may be asking what the term Health 2.0 means and luckily for you Indu Subaiya Co-Founder of Health 2.0 provided us with an answer. Health 2.0 applies the same social networks and user-generated focus as Web 2.0 (which has been around since 2003) to the world of health care. It began as a consumer-driven movement with providers becoming involved a bit later. More recently the concept has grown as a result of its partnership with health care reform. Another noteworthy aspect is its ability to foster data-driven decision-making. Currently, there are about 1000 companies actively engaged in Health 2.0.

Bottom Line: Health 2.0 gives you (the patient, caregiver, provider, payer) the tools to be able to get the information to make better decisions.

To better illustrate Health 2.0, the panelists discussed their companies’ developments. Dr. Marlene Beggelman founded Enhanced Medical Decisions which developed an online medical solution that uses “natural language” search technology, to enable users to quickly and easily find accurate information on drug interactions and reactions.. Linda Von Schweber the Co-Founder of Surveyor Health discussed their software’s ability to create an online medicine cabinet for consumers where they can learn the various side effects and interactions of the drugs they are taking. Eliza Founder and President Alexandra Drane detailed the personalized voice-based service they developed that helps consumers make better health care decisions. All of these technologies are innovative, put consumers in the driver’s seat and support efficient, safe and quality health care.

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By Robin Strongin.  Congratulations to our colleague, Sharon Terry!

Sharon was recently announced as an Ashoka Fellow for improving health outcomes for patients who have genetic diseases by aligning incentives and structures so that they facilitate, rather than obstruct, the continuum of research, drug development, treatment, advocacy, and support.

Ashoka is the largest association of leading social entrepreneurs in the world that strives to enable the world’s citizens to think and act as changemakers. Working in over 60 countries around the globe in every area of human need, Ashoka Fellows demonstrate an unrivaled commitment to bold new ideas through a combination of compassion, creativity and collaboration. Fellowship is a distinguished lifelong position attained only after a rigorous selection process.

You can share Sharon’s Ashoka journey by following her on Twitter at @sharonfterry.  She will also be blogging about her Ashoka experiences on Disruptive Women.

I’ve been tasked with presenting the genetic and rare disease perspective on comparative effectiveness.

I’ll dispense with ‘rare’ right away.  If by rare, we mean single gene disorders, then perhaps it is a useful designation.

If by rare, we just mean the equivalent of the US definition of orphan disease, i.e., less than 200,000 people in the US, then we should ask a few questions. In the old model of test and drug development, the ‘block buster, body count’, model, rare was a useful designation.  In a system built for BIG, then rare needed a boost.  In the new age of personalized medicine, all conditions are rare. In fact, they are usually an N of 1 after factoring in the myriad of genes involved, epigenetics, environment and so on.  As we enter new ways of dealing with common conditions, they too will be fragmented into dozens, sometimes hundreds, of rare conditions.  Thus rare and common conditions have similar challenges in that realm.  For these reasons, I recommend we lose the word ‘rare’.  I know it has a rich and abundant history in the Orphan Drug Act, but in addition to the aforementioned issues, I think siloing our thinking around disease into these social constructs of abundance of disease misses opportunities that would blossom were we to consider gene families, pathways and targets instead of incidence and prevalence.

Let’s move then to single gene disorders.  Comparative effectiveness would have to go on unemployment if it depended on single gene disorders for its first tasks.  Most single gene disorders do not have a treatment, let alone several.  And once one is developed, it is hard for a second one to be developed given the lack of financial incentives in the old paradigm.  Perhaps a first step in comparative effectiveness for single gene disorders is creation of ANY treatment for these conditions.

On to genetic conditions.  I think genetic conditions have already been spoken for in all of the preceding posts – because all disease is a mix of genes and environment, and so all of the conditions spoke about, either explicitly or implicitly, are genetic to some extent.  That said, I believe genetic diseases, and genomic signatures of attributes of disease, like tumors, offer ways to quantitatively measure expression thereby offering a new level of scientific scrutiny for disease.  While most genetically and genomically authored tests and treatments are nascent and have not yet been scrutinized, we are seeing some assessments of genetic tests, at least.  These are not complete comparative effectiveness studies, but they use methodology that might offer something to the field of comparative effectiveness.  If the field does use methodologies like those of EGAPP, then it will be important to do a broader assessment of the methodology before wide spread implementation.  From the website, “The project’s goal is to establish and evaluate a systematic, evidence-based process for assessing genetic tests and other applications of genomic technology in transition from research to clinical and public health practice.”  There are those who ask why almost all tests that EGAPP has assessed have failed to meet the requirements to pass into clinical practice, when some of these tests have done so in a variety of ways.  EGAPP is a good example of how hard it will be to do comparative effectiveness, since its assessment (far from comparative effectiveness) is so difficult, resource and time consuming.

However, I look forward to our foray into comparative effectiveness.  I believe it is time for the practice of medicine to move from being a cottage industry.  Comparative effectiveness, coming of age in the genomic/informatics era, while we move toward individualized medicine (commonly known as personalized medicine), will be an effective tool if, in the words of the post by Randel before me:

“A fair, open, cooperative public/private process, if designed properly will enhance the information needs of patients, physicians, and scientists and eliminate wasteful and ineffective medical technologies and procedures. Implemented without a fix of the payment system, however, the fear that this may stifle access and innovation will be realized.”  If we wish to move medicine out of the cottage industry realm, reimbursement has to come too.  There are exciting months ahead of us – let’s not call each other names like rare or common, genetic or infectious, popular or unpopular.  No disease, condition, or disorder should be left standing around the edges of the dance floor while the rest are dancing.

Stay tuned to the collaborative discussion about health reform resulting from the flash mob on June 17, 2009.

Inform Health Reform

http://fastercures.blogspot.com/2009/06/fastercures-joins-healthcare-advocates.html

One of the best things about blogging is the opportunity it provides to “meet” some incredible people. I’d like to introduce you to one of them, Carrie Ostrea, Hannah’s mom. Hannah was born with Gaucher’s Disease—a rare disease. Carrie is on a mission—she shared the following with me and asked if I would help “get the word out” about her efforts, her Hannah, and her hope to make change. A Disruptive Woman in every sense of the word.

To learn more, read on:

It is so important to me that awareness be created regarding the Ryan Dant bill as well as rare diseases such as Gaucher’s Disease. That is why I’ve dedicated my blog not only to sharing updates with family and friends, but to create awareness for rare diseases, legislation, and other life experiences raising a child and family with unique special needs.

Here are some details regarding the Ryan Dant bill. I have actually been emailing with Mark Dant, Ryan’s Dad, about getting Hannah very much involved.

Basically, the bill will remove the income requirement for Medicaid if the applicant’s medical treatment would cost more than $250,000 a year (Hannah’s medication will cost about $250,000 to $300,000 a year as an adult, and that doesn’t include doctor’s fees, other procedures, therapies, and surgeries). If Hannah was a young adult, she would have to get a low-paying job (poverty level) in order to get Medicaid for her treatments because there are very few insurance companies that would accept an adult with that kind of insurance cost.

Here is a copy of my letter.

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In the spirit of President Elect Obama’s/HHS Secretary Designee Tom Daschle’s efforts to mobilize a grassroots “get out the health” series of house parties, I am re-posting my first Disruptive Women post:

My Top 10 Priorities for the Next HHS Secretary (NOTE: this was written prior to the selection of Tom Daschle–not surprisingly, I was holding out hope for a woman–no offense to Mr. Daschle):

The next Secretary of the US Department of Health and Human Services (DHHS) will have a plate that is not only full, but is overflowing. While all the political rhetoric is focused around access—health insurance for all—there are a number of other critical areas that need immediate attention as well.

Clearly there are many more than 10 priority areas. However, if I just so happened to find myself sitting across from the next Secretary of HHS, I would remind her (just indulge me on that) that she is the Secretary of Health AND Human Services—that for her to make a dent on the health side of things, she must take into account whether people have: the support systems they need, heat, a home, transportation, enough to eat.

Here is my list of the top 10 priorities, in no particular order:

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Transforming health through genetics. That is the mission of the organization I lead – Genetic Alliance.  Almost 5 years ago I took on the leadership of this organization.  I had some strong inklings at the time, about transformation, about health.  While I was developing Genetic Alliance’s path to transformation, both internally and externally, with some phenomenal colleagues, the world around us was changing in similar fashion.

I sometimes see genetics as a leading edge, a knife that is cutting through the old, crusty, barriers.  It does this perhaps because it is new, but after leading with the novel edge, it has a great deal more punch.  I believe it will be an innovative disruption (a la Clay Christensen) because the health care system will not be able to adjust enough to fit its value inside the system (or lack thereof).

Starting with the power of understanding family history (still perhaps the most powerful genetics tool) to the sophistication of personalized medicine (using genetics and genomics to tailor diagnosis and treatment), genetics and genomics will both buoy and stress an overstressed healthcare system.  It is time for change.  It is in the works, on the drawing tables and in people’s hearts and minds. (more…)

So-called “medical homes” are finally receiving national attention from the Centers for Medicare and Medicaid and foundations after their purported inception over 30 years ago by pediatricians (home care nurses have been coordinating health care for people with chronic illnesses for more than a century). But we’re about to make the same mistake that we’ve made in developing other approaches to improving health care nationwide—we’re medicalizing it, instead of focusing on health.

Medical homes are proposed to be primary care practices where people can get help with coordinating their care, particularly for chronic illnesses. The U.S. health care system emphasizes specialty practice rather than primary care. It’s one of the reasons why we pay more than any other nation for health care but have outcomes that lag behind those of even moderately developed nations. If I have diabetes and heart failure, I go to one specialist for treatment of my diabetes, the cardiologist for my heart failure, the gynecologist to get my annual GYN exam, a podiatrist, a retinopathist or ophthamologist, a dentist who may prescribe medications before and after procedures, a shrink to help me cope with this mess, and possibly others to screen my various body parts for myriad diseases. Each is prescribing medications that may interact in adverse ways. In fact, I may end up with a costly hospitalization because of these adverse effects. No one knows all of me or focuses on my overall health—unless I have a primary care provider who can oversee all of these specialties, follow all of my treatments and medications, and coordinate my care. (more…)

Shortly after the passage of the Genetic Information Nondiscrimination Act, in the 110th Congress, a reporter asked me why I thought the bill was so important. I pondered the question briefly and replied, perhaps in a way she was not expecting, that I felt we now were poised with an informed congress who better understands the potential importance of an individual’s genome information.

To take that thought one step further, I believe this landmark legislation and the thirteen years which led up to its passage have provided our country and our citizens with a renewed energy to guide our congress once again to build the next story – providing our citizens with the potential for better and more personalized healthcare.

Earlier this month, we once again saw the topic of genomics and medicine brought to the halls of the 111th Congress with Representative Kennedy’s introduction of the Genomics and Personalized Medicine Act of 2008 (H.R.6498). The bill originally proposed by Senator Obama in the 110th Congress once again brings new hope for patients and signals that scientific innovation is important in our country.

As a scientist who is passionate about the ability to use the knowledge of the genome to improve human health through better disease diagnosis and treatment, this legislation let the debate begin.

I am anxious to see once again how science and technology can disrupt the future of “health care as usual.”

I look forward to sharing our progress in this field of personalized medicine and sharing my experiences in both the pharmaceutical industry during my time at Pfizer and in my new role as the CSO at Helicos, an innovative single molecule DNA sequencing company poised to play a key role in our path to the future.