Posts made in October, 2010

Got Sleep? Zeo Personal Sleep Coach helps with those Zzzz’s. Want one?

Posted by Liz on Oct 8, 2010 in sleep disturbance | 4 comments

Did you know that sleep problems have been reported in as many as 40% of women in the late perimenopausal stage and as many as 35% to 50% of women in postmenopause? The culprit? In addition to vasomotor symptoms, i.e. hot flashes and night sweats) lower estradiol and fallopian stimulating hormone levels can interfere with both falling and staying asleep. Add stress, emotional arousal, environment and alcohol or caffeine to the mix and you’ve got a woman on the verge. Personally? My sleep stinks; I wake up several times a night and regularly early in the morning, even though I rarely have trouble falling asleep. In fact, I don’t recall the last time I slept through the entire night.

So, how can I get more of those much needed Zzzzs? Well, I am hoping that Zeo can help.

Zeo is a home-based tool that uses SoftWave™ technology to track sleep patterns. The Zeo system is geared towards helping individuals understand how they are sleeping so that they can address factors (e.g. diet, stress, or environment) that may be profoundly hindering or interfering with their sleep.

Zeo collects information that summarizes the previous night’s sleep, including time spent in each sleep phase (i.e. light, deep and REM sleep), total time asleep, time it takes to fall asleep, and number of times awakened during the night, and displays it in a graph at bedside monitor.This information can then be uploaded so that sleep patterns can be tracked and trended along with individualized input about environmental and social factors that might disrupt sleep from night to night. Zeo also includes personalized sleep coaching. As the company says, the power of Zeo lies in its personalization, so that you can scientifically track your sleep phases and correlate them to the impact that daily habits have on your sleep. What’s more, I have looked at the scientific studies and the technology it uses to track your sleep not only favorably compares with what experts consider the gold standard for measuring sleep (polysomnography) but also does so in a range of healthy and “disordered” sleepers.

I’ve used Zeo for two nights so far. And guess what? It’s telling me that the fatigue I’ve been feeling is truly due to the fact that I’m not getting the restful sleep that I need. So, I am going to collect six nights of sleep information to create a foundation or baseline of my sleep pattern, and then undergo the Personal Sleep Program to see what I can change to optimize my sleep health.

I met a Zeo, Inc co-founder at last week’s epatient conference and after a conversation regarding sleep and menopause, he graciously sent me two units to share with my readers. I’ve given one of these units to a reader who is an insomniac and who is perimenopausal. But I’d like to give another Zeo to you. Here’s how:

Tell me in the comments section about your general sleep and how your symptoms or habits might be affecting it, along with steps you’ve taken or not taken to deal with the problem.  The caveat? You must be experiencing some sort of menopausal symptoms or be in menopause and be willing to share your experience (anonymously) on Flashfree after a month’s use.  If I get enough comments, I will  randomly choose one winner to receive a Zeo Personal Sleep Coach monitor. What’s to lose? How about one more night’s sleep?!

[Disclosure: Zeo, Inc. provided me with three Zeo Personal Sleep Coach monitors – one via the epatient conference and two directly. Although this post was neither paid for or solicited by the company, I have eagerly agreed to write a post on menopause and sleep for their blog.]

Wednesday Bubble: Will LibiGel liberate testosterone for women?

Posted by Liz on Oct 6, 2010 in Uncategorized | 1 comment

Female sexual disorder, also known as hypoactive sexual desire disorder (HSDD, i.e. lack of sexual desire) is big business and the race for the gold ring continues. While the FDA effectively put a halt to the antidepressant flibanseran only months ago, testosterone therapy continues to drive the march towards finding a cure for a low libido. The question remains, however, is this a good or bad strategy? And how about risks and benefits of adjunctive testosterone? Is it safe?

HSDD is a disorder that robs a woman of her libido and sexual desire. It is believed to affect up to 36% of women between the ages of 20 and 70, although slightly higher numbers of women with some degree of lowered sexual desire have been reported. Especially affected are women who have had their ovaries removed and have entered menopause as a result; these women in particular, have low testosterone levels. Notably, however, not all women who experience diminished sexual desire have low testosterone levels and the cause of HSDD is unknown. In addition to physical causes, relationship and interpersonal/psychological issues are also believed to play a role, making the condition even more difficult to treat.  And while testosterone may be helpful for boosting libido, it has also been linked to side effects that include acne, excessive hair loss or growth, hoarseness, weight gain, insomnia, voice deepening and migraines. More importantly, use of testosterone has also been shown to increase cholesterol levels in some women, thereby raising the risk for heart disease.

According to research, the HSDD market ranges from $2 to $5 billion. Even more troubling is the fact that in 2009 alone, physicians wrote more than 4 million prescriptions for testosterone to treat HSDD even though it’s not approved as a therapeutic strategy.

LibiGel® is a topical testosterone gel that is applied to the upper arm. Thus far, it has been shown in short-term, 3 month clinical trials, to significantly increase the number of  “sexually satisfying” events by as much as 238% without serious side effects. Since these early trials, the company has been studying over 2,000 postmenopausal women over the age of 50  with an elevated risk for heart disease to observe how well the gel does over the long-term (i.e. 3 years). Thus far, the manufacturer BioSante reports that the rates of reported cardiovascular events and breast cancer are very low and plans to present  interim data later this week at this year’s North American Menopause Society Meeting.

Is LibiGel going to liberate sexually dysfunctional women? And what about the other factors that affect desire, such as relationship status, self-esteem, stress and anxiety? Should we be concerned that physicians already prescribe testosterone ‘off-label’ for millions of women and that the company actually reports that over 90% of women using testosterone unapproved for this use would switch to LibiGel once it’s approved?

I am not quite sure if this is an example of irresponsible medicine or an untapped need. I would like to believe that LibiGel might be effective for certain women who have been forced into menopause due to physical conditions. On the other hand, doesn’t the medical treatment of HSDD ignore the obvious: that there are behavioral, social and environmental factors at play that testosterone therapy won’t and can’t address?

What do you think? Is this a bubble to be burst or the “re-desire” revolution? Only time will tell.

On epatients, women and poetry

Posted by Liz on Oct 4, 2010 in Inspiration, women's health | 4 comments

A week ago, I wrote a post on crowdsourcing menopause with the intent of leveraging the collective force and spirit of women for the better good, or more specifically for our health and wellbeing as we age. I wrote the post just prior to attending the Epatient Connections 2010 Conference in Philadelphia, two of the most inspiring and provocative days that I’ve spent in some time.

You may not be familiar with the term “epatient” but it’s become a buzzword in the health world. And yet, the epatient is a concept that continues to evolve and is not entirely understood by practitioners or researchers or even by many patients themselves. However, like crowdsourcing, the epatient movement has sparked an interest in consumer engagement, participation, collaboration, sharing and connection, all in hopes, as my friend Jane Sarasohn-Kahn implies on her fine synopsis of last week’s conference, of building a foundation of trust upon which health and wellbeing can thrive.

So where do women fit into the epatient movement?

As women, we have long stood on the sidelines as researchers apply study findings in men to our health concerns, as insurers characterize natural life events such as pregnancy as “pre-existing conditions” and on a more personal note, as battle lines jave been drawn between those who insist that menopause is a disease that needs to be treated and those who want to address symptoms in a kinder, more gentler, holistic fashion. Yet, regardless of age or mandate, women need to fully engage in decisions that being made about their healthcare.

A key component of engagement is access: access to health records and notes, access to plans of action and strategies, access to our healthcare practitioners when we need them, access to the right people, to the right information and to the right line of thinking. And at times, access means going round and round and around before we are able to cross imaginary lines that heed our progress and find the path to health. My friend Regina Holliday, a Washington, DC-based patients rights arts advocate, has been leading the fight for access since the death of her husband in June, 2009.

While Regina’s fight is not gender- but people-based, she has demonstrated that women can be powerful advocates for themselves and those they care about, and that advocacy is often borne out of resolve, love and self-respect. Moreover, Regina has shown time and again that sometimes, the smallest gesture can resonate the loudest, a flick of the paintbrush, a line in a poem.

James Russell Lowell once said that “the eye is the notebook of the poet.” For Regina, the eye is her art and her mission, and the window to what has become her soul’s work.  At the epatient conference, Regina stood onstage and invited a glimpse through that window. And what resonated most was her resolve self respect — as a woman, a mother, an advocate and an artist. Her path is unique and yet universal because it is about support, participation, engagement and love. And I suspect that Regina will continue to go round and round until her path is fully illuminated and she reaches her goal.

Below are Regina’s wheels.  I believe that as women, as patients and as mothers, friends, wives and lovers, we can use our resolve to crowdsource and advocate for our health and well-being. What are your wheels? What is your path? And what are you willing to fight for?

Death of the Paper Transfer© All Rights Reserved. R. Holliday.

The Wheals on the Bus By Regina Holliday 3-17-10

The wheels, the wheels: they are a turning,
And past abuses do impress upon this fight.
And thoughts of riots, rights and rulings,
Spin in circles in the shadows of my mind.

I go to sleep at night and think of coding.
Is our savior high within the data cloud?
Is access to our care, as great as knowledge?
Where shall peacefulness be found?

Does freedom lie within a soup of letters?
Do PHR’s and IEP’s and EKG’s and HIT
Open doors to our gaining knowledge?
Is ARRA an acronym, or is it a primal roar?
Arghaa! Arise! An EPI pin, to stimulate
The growth of understanding,
That we are all Patients in the End.

Here, I take my stand. I can do no other;
For past abuses do inform this time,
And, two by two my Luther’s tell me
To demand my data rights ,
To be resolute, that separate is not equal,
And that no man,
Should stand
Between me and the Word.

Is 1135 a page in the Annals of Oncology about Kidney Cancer?
Or is it Volume 113 of Pediatrics no. 5 in 2004: “The Genetics of Autism.?”
Or is 1135… simply, “JESUS WEPT.”
I will see you in Galilee, Galilee, Galilee
I will see you
In the ring, the circle, the circuit,
And the wheals they are returning….

The wheels on the bus go round and round,
Round and round, And Rosa parked.
She refused to give up her seat at the table.
ICD-10, Do you intend, to save me from my coding?
Do you entreat, that we retreat?
And expect the patients, now informed and comprehending,
To sit idly by awaiting your instructions?

Physician Heal thyself,
And let empowered patients speak,
And draw attention to those that seek
A better and healthier tomorrow.

About the poem… in the poet’s words

I wrote this poem in the weeks leading up to the final healthcare reform vote in March 2009. At that point, I had done many interviews with reporters who wanted to focus on insurance reform and did not want to discuss data access, nor did most people really want to talk about viewing the patient as a whole person.  So, I wrote a poem that would mention HIT, Health Reform, Autism, Child Abuse and Jesus.  It is quite a heady mix.  It can be hard to listen to.  But patients are complex and if we truly listen to them we can change everything.

Regina Holliday

NewsFlash: Canadian Cancer Society Recommends Against HRT Use Except as Last Resort

Posted by Liz on Oct 1, 2010 in breast cancer, HRT | 2 comments

Researchers and representatives comprising the Canadian Cancer Society are recommending that women avoid taking hormone replacement therapy or HRT for any reason other than relief of severe menopausal symptoms that have not responded to other treatments. Wow! Talk about a newsflash!

The reason for last week’s statement is a new study published online in the Journal of the National Cancer Institute that demonstrates an almost 10% decline in the rate of breast cancer among Canadian women between the ages of 50 and 69 following a drop in HRT use.

Utilizing data on HRT prescriptions, incidence of breast cancer, mammography and HRT use in 1,200 women between the ages of 50 and 69, considered primary users of HRT, to a 9.6% decline in the incidence of breast cancer between the years 2002 and 2004. Comparatively, rates during the period of time just before the time studied, i.e. 1998 and 2001, had declined by less than 1%. Incidentally, the more than 50% drop in use of HRT during this time period directly followed reports from the Women’s Health Initiative Study showing a increased risk of stroke, heart attack and breast cancer among users of HRT. Moreover, researchers found that the decline in breast cancer cases were not the result of fewer women getting mammograms; in fact, mammography rates remained stable during this time period.

The researchers say that their results, which are the first in Canada to examine the potential link between widespread declines in HRT use and breast cancer among postmenopausal women, support the Society’s goal of providing Canadian women with information about how to reduce their risk of developing breast cancer. Although the study findings may possibly be limited by the fact that the rely on self-reports of use of HRT and do not take into consieration how often and for how long HRT was used,  the researchers claim that the results provide meaningful information on factors that influence breast cancer. Now, they need to determine if HRT promotes or causes breast cancer.

When I asked for a statement from lead study investigator Dr. Prithwish De, he said: “The Canadian Cancer Society’s ongoing review of the evidence on HRT and breast cancer since 2003 led us to our current position and the research study findings reaffirm this position. The Society recommends that women avoid taking HRT for any reason other than to relieve severe menopausal symptoms that have not responded to other treatment. We understand that each woman’s experience with menopause is unique. If, after consulting with their healthcare professional, a woman decides to take HRT, it should be the lowest effective dose for the shortest time possible.”

October is breast cancer awareness month. Educate yourselves and those around you.