By Robin Strongin. E-Patient Dave:  One Patient Advocate’s Survival Story and What We Can Learn From Him—How to be an Empowered, Engaged, Equipped and Enabled Patient

Photo by Roger Ramirez, Chariot Photo. License: Creative Commons Attribution ShareAlike 3.0

Richard Davies deBronkart Jr , known by many as e-Patient Dave, is a cancer patient and blogger who, in 2009, became a noted activist for health care transformation through participatory medicine and personal health data rights.  In 2010, he became a published author and Disruptive Women in Health Care’s August Man of the Month.

I was a middle-aged guy going through life, as involved with my own health care as I was with my car’s carburetor, which is to say, virtually not at all.  And then I found out I was almost dead.

That’s how my interview with Dave started. 

Dave was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in his lungs, bones, and muscle tissue, his prognosis was dire.  Now, almost four years later, e-Patient Dave has emerged as a patient advocate, with a self-described calling to connect, engage, and empower patients.

Dave had been proactive for years when it came to choosing providers he liked, so when it came to crunch time, he  was fortunate on several levels: he received excellent treatment at Boston’s Beth Israel Deaconess Medical Center; his physician, Dr. Danny Sands, who in addition to serving as Dave’s primary care doc since 2003, also serves as the Senior Medical Informatics Director at Cisco and as such is on the bleeding edge of online communications and health information technology; and, the Biologic Therapy program helped Dave participate in a clinical trial for the powerful High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. His remaining lesions have continued to shrink.

Technology and Patient Advocacy:  An Author is Born

Dave observed that many patient advocates come to patient advocacy because they were injured, or had a negative experience with the health care system.  This was not the case for Dave.  He had a life altering experience; a near fatal disease that rather than kill him, turned his life in a different direction.

Before his diagnosis, Dave was a savvy online guy. “I’ve been online since 1989, heck I even met my wife online.  So it’s no surprise that I ended up with a cutting edge academic medical center and physician.”

While the health professionals, life saving medicines and medical technologies were key to his survival, so too was the Internet—it became another of Dave’s lifelines:

• Dave was able to communicate with his primary care physician by email and his hospital was committed to making information available electronically;
• Dave used the web to access information about his disease;
• He joined the Association of Cancer Online Resources, an expert patient community; and
• A participant in online communities before his illness, Dave quickly figured out that using online technology to update his friends and family not only provided an efficient means to communicate what was happening and how he was doing, but it connected him to a great number of people who cared about him, supported him, were there for him.  He started an online journal and support community on CaringBridge.

(more…)

By Robin Strongin. Over the next several weeks Disruptive Women will be blogging about the various aspects of patient advocacy.  Then in September, we will disseminate an e-Book on the topic.  To get ready for this series, I invite your input; think about what patient advocacy means to you and share your stories with us. Please comment on this post to let us know what you think about the topic– its level of importance in health care and any questions you may have or experiences you are comfortable sharing.I hope you will join us in this very important dialogue.

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 Santi Bhagat, MD.  It seems that children with chronic medical conditions and disabilities (CMCD) just disappear into thin air when they grow up.  No-one tracks these young people, so we have no idea what happens to them.  We don’t know if they have insurance and doctors; are sick and in emergency rooms; go to school and have jobs; and/or live independently and have social lives. It is estimated that 600,000 young people with CMCD enter adulthood every year, into a system devoid of any supports and services, a system that is completely unprepared for them.  

To help improve things for children with CMCD as they transition into young adults , Physician-Parent Caregivers (PPC), is launching EMERGE–a new campaign  next week…stay tuned…I will be blogging more about that in the coming weeks.  

In the meantime, I would like to introduce a special PPC young adult leader, Amy Long.  Amy is one of America’s 8.2 million amazing young adults with CMCD who push through barrier after barrier and never give up on their dreams.  Amy gave me permission to share her first person account of what it is like to be a young adult with a chronic medical condition.  She calls it, the Google Circus.

GOOGLE Circus

Five years ago, I aged out of my pediatric skeletal dysplasia clinic (a place for kids with bone diseases).   I will never forget my first two adult medicine experiences….The first happened late one Fall evening. 

I was in college dorm my senior year and I woke up  from a late afternoon nap with a terrible headache, flashes of light and floating dots in my vision. I have a rare connective tissue disorder and form of arthritis called Kniest Syndrome that puts me at risk for a detached retina.  The flashes of light and floaters are common symptoms of retina disease.  Retina detachment is only fixable in the first 24 hours. I immediately called Student Health who told me they could get me into see an eye doctor next week.  I tried to explain that I couldn’t wait that long but no one seemed to take me seriously. All the doctors had left for the day. I called a friend and we drove the Emergency department.

We arrive. I spell Kniest no less than 3 times for the tirage nurses. They lead me back to the eye exam room and leave the door open with my chart hanging there. The doctor grabs my chart, starts to come in, looks at my file. His eyes widen and he backs out of the room. Through the open door I watch him try to Google Kiiest Syndrome.  He flips through the links and then finally after five minutes comes back in and sheepishly asks me, “So what exactly is going on?” I tell him, yeah I have a migraine-like headache, and I am seeing stars. I have a collagen disorder that causes high myopia and thus very fragile retinas. “Yes, yes, how exactly do you spell your condition?” I spell Kniest 2 more times.  I then watch him turn around and type Kniest Syndrome into Google. (more…)

By Robin Strongin. I spent part of this past weekend at the Ovarian Cancer National Alliance (disclosure-a client of mine) Annual Conference and came back both humbled and inspired.  It is a remarkable experience to talk with people whose lives have been profoundly changed by cancer.  Their grace and strength, their determination to DO something — about research, about curing this disease, about changing laws, about helping others – was inspiring.  The women I met were young and not so young, they had hair, and bald, tatooed heads, they came from all over the country and they were all, in their own way, supporting each other and themselves. Many of them had become advocates.

Over the years, I have noticed an exponential increase in the number of professional health advocates and individual patient advocates.  Many advocates, not surprisingly, have been personally affected by illness–and the unbearable frustration that comes with having to not only focus on healing, but navigating multiple dysfunctional health care systems along the way–whether it’s poor quality care, misinformation, lack of information, difficulties finding health care professionals who meet individual needs, to name a few.  

Advocates are certainly not new, but what has changed are the availability of new online and mobile tools to connect advocates, their families, their friends, and others with similar situations.  The ability to organize, advocate, tell your story, through various mediums has fueled a new phase of patient advocacy– and given voice to what I see as a revolution.

Disruptive Women in Health Care is working on its newest e-book which will feature posts by a wide range of patient advocates–these stories and shared experiences will not only move you but will provide useful information so you too can advocate.  

Look for these posts throughout the summer, and send us your stories as well.

By Robin Strongin.

Paul F. Levy, Disruptive Women’s June 2010 Man of the Month, was appointed President and Chief Executive Officer of the Beth Israel Deaconess Medical Center in Boston in January 2002.  BIDMC is one of the nation’s preeminent academic health centers, providing state-of-the-art clinical care, research, and teaching in affiliation with Harvard Medical School.  Previously, Mr. Levy was the Executive Dean for Administration at Harvard Medical School, where he was responsible for administrative, budgetary, and facility issues, as well as community and governmental relations.  He was also involved in coordinating collaborative ventures between HMS and its affiliated hospitals.  Before joining Harvard Medical School, Paul Levy was Adjunct Professor of Environmental Policy at MIT, where he taught infrastructure planning and development and environmental policy for seven years.  Mr. Levy has served as Executive Director of the Massachusetts Water Resources Authority, Chairman of the Massachusetts Department of Public Utilities, and Director of the Arkansas Department of Energy.

Ever since I created the Disruptive Women in Health Care blog, I wanted to meet Paul Levy.  Who was this guy who boldly started blogging when most executives in health care either didn’t know what blogging was or were frightened by legal into thinking that blog was a 4-letter word?  His blog, Running a Hospital, is “a blog started by a CEO of a large Boston hospital to share thoughts about hospitals, medicine, and health care issues.”

I recently spoke with Paul and the first thing I asked him was Why Blog?  Here’s what he had to say:

Why did you decide to blog?  Was there one incident that propelled you, an aha moment, or had you been thinking about it for a while? Paul simply said, “It was a lark.”  He explained that in August ’06 he was reading a New York Times article about how executives don’t blog.  “Being a contrarian, I started blogging.  It was an excuse to learn.”  Paul mentioned that the Boston Globe took notice, wrote about his blogging and then it was “off to the races.”  He added that he’s obsessed by blogging…in a good way.  “It helps consolidate my thinking.”

As you reflect back over your years of blogging, what have you learned? “I hadn’t realized the power of blogging until I actually did it.”  He gave me an example: One of his top priorities at BIDMC is a major emphasis on quality and safety, eliminating preventable harm.  Paul experimented by using his blog to publish infection rates and clinical outcomes. “I didn’t worry or think about how unusual it was—I just did it.” [Pretty disruptive of him—I knew I liked this guy]. He discovered that the blog served as “an incredibly powerful, transformative management tool.”  The blog became the vehicle that allowed everyone in the organization to see the data, to see how they were doing.  An audacious goal was established, and the blog enabled everyone in the hospital to track progress. According to Paul, publishing the data on his blog helped foster the desire to meet the goal.  “The approach was well received and appreciated. And, it created no legal problems.”

Since last week’s Health 2.0 conference in Washington DC was fresh in my mind I asked Paul, What do you think of the blossoming Health 2.0 phenomena…what is it’s promise and what work needs to be done? He once again stressed that the value of Health 2.0, and social media in general, lies in the ability of these tools to provide a way for people to share and exchange data, information and ideas. “They support a community of interest.”

We talked for some time about how unfortunate it was that health care companies, particularly those in the life sciences, fear they will be criticized—or worse, if they take the social media plunge.  We also agreed that the real power of these tools reside in patient advocacy—enabling people to actively participate in their own health.

I have to ask—health reform—as a veteran of the Massachusetts experience, what do you think about where we are and where we are headed? “Massachusetts is prologue for the country as a whole.  We certainly had a head start with reform, likewise with the cost implications.  We are working through all that.”  Paul stressed to me that the costs were under-estimated in the law and the delivery system is still a mess.  He doesn’t see the government fixing that. “We won’t improve the delivery system by government fiat; it has to come from the profession.”

Any words of wisdom to share as we conclude our conversation? “Please, be disruptive… disruption and imagination are the driving forces for change.”

By Robin Strongin. This was a busy week in women’s health—an issue of global importance. On June 7th, Women Deliver 2010, the largest meeting on global maternal health in the last ten years, kicked off in Washington, DC. UN Secretary-General Ban Ki-moon delivered opening remarks and US Secretary of State Hillary Rodham Clinton addressed participants via video. The conference offered an opportunity to take stock of progress that has been made in improving global maternal health while assessing the challenges that remain.

Women Deliver 2010 highlighted achievements in reducing maternal mortality, breakthroughs in reproductive technology, the role of women’s health in development, and remaining obstacles to improving maternal health around the world. The conference’s 3,000 participants, including heads of state, ministers of health and leading maternal health advocates, called on governments, donors, and multi-lateral organizations to increase their financial commitments to women and girls. For more information on Women Deliver, visit: www.womendeliver.org and to watch replays of the presentations, click here: www.womendeliver.org/webcast.

During the conference, Population Action International launched a new documentary, Empty Handed: Responding to the Demand for Contraceptives. WATCH THE TRAILER

Empty Handed Advocacy Short from Population Action International on Vimeo.

Around the world, more than 215 million women lack access to basic contraception. Empty Handed tells the story of women’s lack of access to reproductive health supplies (contraceptives and condoms) in sub-Saharan Africa, and its impact on their lives. The film documents the challenges at each level of the reproductive health supply chain and identifies key areas of improvement.

Empty Handed was shot in Uganda in March 2010 by PAI filmmaker Nathan Golon with support from the Reproductive Health Supplies Coalition.

Earlier this week Dr. Margaret Chan, Director General of the World Health Organization, addressed the World Health Assembly in Geneva and brought up the topic of vaccines. She noted some of the successes in addressing the world’s health and development issues and stated that “vaccines are among the best life-saving buys on offer, preventing an estimated 2-3 million deaths per year.” In the next minutes, however, she also addressed the setbacks – occurring when people decide that vaccines are too risky. She counted the problems with measles, pandemic vaccines and polio.

In fact, I just finished reading a unique recount of the measles vaccine controversy. Something that wasn’t a paper at all, but a comic strip type account that said it all. I highly you encourage to read this. For those of you not familiar with the Andrew Wakefield measles saga, the British doctor claimed the administration of MMR vaccine was linked to autism.

The media was all over this and picked it up everywhere. Unfortunately, despite a lack of evidence to support his claims, co-authors who later removed their names claiming the study was flawed and a retraction from the Lancet in Feb 2010 after the General Medical Council in the UK found his conduct “dishonest and irresponsible” (more than a decade later), the damage was done and continues to be felt. Fueled by sensationalist media reports, many parents in the UK and around the world chose not to vaccinate their children and outbreaks of measles began to occur. The misinformation was further propagated by celebrities who get more TV coverage than the scientists who have shown through studies that there is no link between autism and vaccines.

Every adult has the right to consider what is best for themselves or their child. But shouldn’t more be done to consider the impact of disregarding the evidence has on others? There will always be risks with vaccines and science can’t always find or predict every risk. The experience with measles vaccines and the supposed link with autism shows that there also health consequences when individuals refuse to accept the findings of rigorous research.

By Liz Scherer.  A Twitter friend recently asked me about stopping hormone replacement therapy (HRT). It was a question that I hadn’t explored thoroughly although I write about HRT often on my blog. In fact, I had never truly considered the “what now” of the issue, as in, what if you decide to go off hormones or try alternatives after you’ve been on HRT?

Interestingly, when I looked into the issue, the answer seemed to be even less clear-cut than the therapy. In fact, there are no guidelines for stopping HRT.  Granted, until the Women’s Health Initiative started to reveal the dangers and risks of HRT, there was no real reason to stop therapy, (although, I’m of the mindset that there’s really no good reason to start HRT).

Fortunately, researchers are finally starting to look into this issue although study findings (which are published in the online edition of Menopause) highlight that the practice of stopping HRT is intuitive and not evidence-based.

So, what did they learn?

Among 438 group practice physicians surveyed, an overwhelming majority believed that women should taper HRT, with most believing that the best strategy was not only to slowly decrease the dose, but also to reduce the number of days HRT was taken per week. However, they had no suggestions with regards to how to taper use of HRT patches, even though the patch is increasingly being recommended and touted as a safe solution to oral hormone therapy. (Notably, like the evidence from this particular study I am talking about, the evidence that shows the safety aspect of the HRT patch is mostly observational, meaning that it is subject to personal bias.)

More interesting, however, was the finding that the majority of the physicians who participated in the study were more strongly influenced by their personal beliefs than by colleagues’ actions or most importantly, by a woman’s preference. In other words, physicians are not asking their patients about what they would like or if they have any thoughts about stopping therapy. More shocking was the fact that only 2% of physicians surveyed relied on actual evidence to stop hormone therapy. Physicians who indicated that they believed that some action should be taken if symptoms returned after stopping hormones overwhelmingly turned to behavioral changes or exercise, not to alternative therapies such as herbs.

In an era of evidence-based medicine and strategies that integrate eastern and western philosophies, why are our physicians relying on their own personal belief systems rather than real facts? Why aren’t they asking their patients how they feel about stopping therapy or if they have fears about symptoms returning and then thoroughly exploring alternatives ? Are these findings in a vacuum or will they be found on a broader basis? Does the problem lie in fact that there are no standards?  What’s more, why hasn’t the American Medical Association or American College of Obstetrics & Gynecology devised guidelines for stopping HRT therapy? Why hasn’t the Food & Drug Administration demanded this guidance in labeling?

Finally, why do we continue to play Russian Roulette when it comes to women’s health? Isn’t it time for a change?

Let’s start with HRT. There are a lot of folks out there who continue to espouse the benefits, deny the risks and ignore the facts. Clearly, this story continues to unfold. Unsafe medical practices are even more unsafe when they are not backed by evidence, right? Is HRT the exception?  What do you think?

[This post, appeared in part, on Flashfree on May 10, 2010.]

NOTE:  Disruptive Woman Sharon Terry is quoted in TheWashington Post article linked below. If you haven’t already done so, take a look at Disruptive Woman Dr. Archelle Georgiou’s post entitled Stop the Drama and Spit in which she shares her personal experience with genetic testing.

“Beginning Friday, shoppers in search of toothpaste, deodorant and laxatives at more than 6,000 drugstores across the nation will be able to pick up something new: a test to scan their genes for a propensity for Alzheimer’s disease, breast cancer, diabetes and other ailments. ” Click here to read the rest of The Washington Post article.

 Loading ...

By Pamela Cipriano. Access to care from Nurse Practitioners got two boosts in recent weeks.  The health insurance reform legislation (Patient Protection and Affordable Care Act, Public Law 111-148) contains important provisions that will address payment and recognition of NP services in medical homes and nurse managed health centers. (Refer to Lisa Korin’s blog 4/16 on “The Patient Centered Medical Home Model:  A Way to CostiEffectively Improve Quality of Care”) Original plans for medical home models had been stalled, and included payment only for physicians; the new law recognizes nurse practitioners as leaders of primary care practices and makes them eligible for reimbursement.  Nurse practitioners are also key providers and leaders of Nurse Managed Health Centers (NMHC).  Reform legislation has made available a new $50 million grant program to help innovative safety net providers.  NMHCs provide a full spectrum of primary care including health promotion and disease prevention to under-served populations, primarily in areas where the supply of primary care physicians is not adequate.

Another development, which may be below most people’s radar screens is a timely report from the Macy Foundation.  Dr. Linda Cronenwett, Professor and Dean Emeritus of the School of Nursing, University of North Carolina, Chapel Hill, and Dr. Victor J. Dzau, James B. Duke Professor of Medicine, Chancellor of Health Affairs of Duke University, and CEO of Duke Health System were co-chairs of a conference held in January of this year addressing, “Who will provide primary care, and how will they be trained?” While hailing some of the newest developments in team care and use of electronic technologies, the group called for fundamental changes in the education of primary care providers as well as reformed payment structures and incentives that encourage more providers to engage in primary care to meet health needs of individuals and communities. The conference conclusions are rich in actions to address a future workforce, new interprofessional education models, strong innovative leadership, and removal of barriers that hinder nurse practitioners and physician’s assistants from being primary care providers.  A full report of conference proceedings is due out later this year; the co-chair conference summary can be found at:  http://www.josiahmacyfoundation.org/documents/jmf_ChairSumConf_Jan2010.pdf

A Yahoo! news report last week highlights all these developments, underscoring the debate around NPs providing primary care, but highlighting the patient satisfaction and quality outcomes we know are associated with care by NPs. http://news.yahoo.com/s/ap/20100414/ap_on_he_me/us_med_dr_nurse

UPDATE:

On our Facebook Fan Page, Susan Rinkus Farrell shared the following great video about Nurse Practitioners:

By Lisa Korin. The media has given much attention to the health insurance aspects of health reform, but less to aspects of the law addressing the root issues.  Yes, the number of uninsured is a huge problem, but let’s not forget that an increasingly chronically ill population needing access to often expensive health services is one the key drivers contributing to the plight of the uninsured even needing insurance.

According to the CDC, nearly 50% of the U.S. population suffers from a preventable chronic health condition, and these diseases account for 75% of the nation’s $2 trillion annual healthcare costs. Much of these costs arise from:  patients obtaining care from multiple healthcare providers, lack of medical care coordination, duplicate diagnostic testing and provider visits, and treatment non-compliance due to consumer confusion.  These facts indicate that increased spending on chronic conditions does not necessarily result in better health outcomes and means that patients with chronic conditions currently receive health care in a manner that may not be the most cost-effective.  These statistics are even more pronounced for minority adults and children as well as for those with low incomes, for whom there are greater disparities in access to care and treatment plan compliance.

That’s why I was glad to hear that H.R. 3590 Patient Protection and Affordable Care Act had provisions related to the patient centered medical home (PCMH) model of care.   According to the Patient Centered Primary Care Collaborative, PCMH is an approach to providing comprehensive primary care to adults, youth and children that broaden access to primary care while enhancing care coordination. Clinicians practicing in the highest level medical home will: (more…)

It’s been awhile since I read a book that has influenced  my thinking.  Maybe it’s because I don’t read as many books for “fun” as I used to.  Maybe it’s because I’ve been pre-occupied with ARRA and HITECH related work or my graduate school course on medical ethics or my teenager’s triumphs and despair as she awaited college acceptance decisions.   But there I was driving in my car listening to a National Public Radio (NPR) segment.  Actually it was Fresh Air with Terry Gross. For the next several minutes I found myself drawn in by an interview with a science journalist named Rebecca Skloot, who wrote a book called “The Immortal Life of Henrietta Lacks.”

Now I’ve worked in the health care field for more than 35 years and lived in the Maryland-DC area for most of that time.  I had never heard of Henrietta Lacks or the HeLa cells.  Somehow I had missed prior accounts of the controversy (such as Cells That Save Lives Are a Mother’s Legacy New York Times November 17, 2001).   What I heard during the NPR interview propelled me to purchase the book and now after reading the book, I find myself amazed by the story and wondering about the many issues the story raises.

Henrietta Lacks’s story is the TRUE story of a woman who unknowingly supplied the first human cells grown in culture, leading/contributing to what many consider to be scientific and medical advancements such as the vaccine for polio, clone mapping, and in-vitro fertilization.   As the story goes in 1951, a doctor at Johns Hopkins in Baltimore took cells from the cervix of Henrietta Lacks who was a poor African-American woman dying of cervical cancer.  What’s so significant about something that happened back in 1951?  It turns out that her cells were/are unique. They have multiplied and multiplied and multiplied and have been used in tens of thousands of research studies by dozens and dozens of researchers.  It seems that a lot that is happening today remains VERY relevant. Not the least of which is just telling Henrietta Lacks’s story.   Her story has implications for ongoing health research and policy and ethics and law and patient’s rights.

(more…)

By Santi Bhagat, MD, MPH. Health Care Reform is off to a good start.  A couple of days ago, I blogged on the debate between the insurance industry and the administration about the interpretation of this new law.  Hats off to insurers for making the right choice, right away, to heed regulations that are forthcoming from Health and Human Services.   I first heard this through the grapevine at the Disruptive Women Breakfast Series this week from Stephanie Cohen, the expert panelist representing the insurance industry.

The law is intended to require insurers to issue policies that provide a full range of benefits for all children with pre-existing conditions starting in September 2010.  That means insurers can no longer refuse to cover children with pre-existing conditions under their parents’ plans, even if the children never had insurance.

This law has far-reaching ramifications.  A recent story about a newborn who was denied coverage at the age of a mere 9 days highlights how critical this law is.   Born with a congenital heart defect, Houston Tracy underwent lifesaving open heart surgery when he was just 4 days old.  His parents cannot afford insurance for themselves, being small business owners, and have individual policies for their older two sons.  After being charged and given the run-around by the insurance company, they resorted to enrolling their newborn in the state’s high-risk pool.

The big question now is how much will insurers charge for these policies.  If the price tag is too high, parents will not be able to afford to purchase policies, and in effect, coverage will be denied to these children.

It is not clear whether HHS regulations will speak to this issue.  The administration will be watching the insurance industry closely.   So will we.

Hygeia Note:  On March 30th, Disruptive Women in Health Care launches the first of its monthly in-person breakfasts.  Among our speakers will be Stephanie Cohen.  Her post appears below.

By Stephanie Cohen.  This month’s health insurance nightmare: Dad is still paying for his daughter’s insurance — and no one is happy.

The situation: I received a call last week from a client whose daughter recently told him she hates her insurance “because it does not cover anything.” He phoned me to see if she had a real gripe, and if I could help him find another policy with better coverage for her.

The problem: It turned out that her policy had a $5000 deductible, which did not include coverage for dental or vision doctor visits. Since she has an entry-level position and not a lot of extra spending money, I told her she had a choice.

She could choose to pay more per month to lower her out-of-pocket expenses, but her monthly premiums would be higher. Since her father was paying her premium, and was happy to do so, I decided the best policy for her was one with a higher premium and lower expenses.

The solution: The decision to pay for an adult child’s health care is a personal one that each family must make, of course. The reality is that once a child turns an age selected on the policy by the plan administrator based on the rules of the state and the size of the employer, they are no longer considered a dependent.

Many times, the insurance company does not notify the parent or the plan administrator that the student has been dropped. The student typically finds out when filling a prescription or when receiving services. 

Keep in mind that it is the parents’ responsibility to notify the carrier that the student is or is not a full-time student and is eligible for coverage. The student is responsible for having a student certification form completed and signed by the bursars office proving they are in school fulltime with 12 plus credits.

If I were the Health Insurance Ambassadors: All students would have to prove they had coverage or they could not attend school.

Although with the recent health reform legislation there is now a new Federal mandate to allow children to be on their parents health plan until 26, it still may be less expensive to insure that child unto themselves rather than remain on the parents plan.  Obviously, the rates will be much lower for someone who is much younger.

The painful truth: Parents can analyze the cost of coverage through the school or an individual policy versus the cost of keeping the child on his/her plan. If the parent has other children on the plan, it rarely saves to pull one child off the plan.

 I encourage you to share your insurance nightmares with me.