The ACOG news release states that “Researchers say this is the first study of its kind to present data on the adverse effects of Pitocin use on newborns.

Are we seriously only now looking at the potential adverse reaction for the babies?  When a huge percentage of moms get induced and even more have their labor augmented with pitocin, shouldn’t we have looked at the effect on babies BEFORE we started using it routinely?

The findings of the study cannot possibly be brand new information.  Drugs.com currently states: “General side effects have included low Apgar scores at 5 minutes. Fetal death has been reported.” “Nervous system side effects… have included neonatal seizures and permanent CNS or brain damage has been reported.” “Hepatic side effects have included neonatal jaundice.”  “Overdosage with oxytocin… can lead to… variable deceleration of fetal heart, fetal hypoxia, hypercapnia, perinatal hepatic necrosis or death.”

How many mothers were told these potential side effects for their babies when having an informed consent conversation about administration of synthetic oxytocin?  Or were they told it’s for the good of your baby and it’s perfectly safe?  Do their doctors even know the risks of the drugs they are routinely administering or are they knowingly lying about safety?  How many moms have been told “pitocin is the same as the oxytocin your body makes?”

Pitocin is routinely administered in high doses that would be IMPOSSIBLE for the body to make on its own.  And it is forced into the bloodstream in a continuous flood, as opposed to the ebb and flow of the hormone that the body naturally synthesizes.

As a result, the mom’s own endocrine system is overwhelmed and prevented from synthesizing its own endorphins and its own oxytocin.  Synthetic oxytocin (Pitocin) blocks the receptors and prevents the body’s own oxytocin from doing its job of changing the neurological pathways of the brain so that you bond with the people around you.  Babies’ receptors will also be blocked interfering with the baby’s brain’s development of the ability to interact and bond with others.

Clearly, the short term negative effects on the baby of the routine administration of pitocin are documented.

But what about the long term effects?  What might result from interfering with the neurological and endocrine processes in the vulnerable and intense perinatal period?  When the brain and body are undergoing massive programming changes, isn’t it possible that, by chemically interfering with these changes, we are causing long-term disruptions? Is it just coincidence that the dramatic increase in autism spectrum diagnoses parallels the dramatic increase of routine pitocin administrations in the majority of births in the US?  There is a conspicuous absence of any mention of long-term effects both in the study and in the ACOG comments.

Why does our socio-medico culture accept the development of a drug, assume it’s safe without fully looking into short-term or long-term implications, and then say whoops sorry, we shouldn’t have done that, when it becomes clear that there are negative outcomes?

The doctors and drug manufacturers are not the ones who suffer the consequences.  The patients and their families are the ones who pay the price of just assuming that it is okay to use a drug, especially on the most vulnerable of our population, without really checking to make sure that it is, in fact, safe.

Unfortunately, the ACOG release falls short of criticizing this practice, stating only that: “The analysis suggests that [synthetic] oxytocin use may not be as safe as once thought and that proper indications for its use should be documented for further study.”

ACOG Release on the Study on the Effects of Pitocin on Newborns

http://www.acog.org/About_ACOG/News_Room/News_Releases/2013/Study_Finds_Adverse_Effects_of_Pitocin_in_Newborns#.UYkdLeDO_9s.facebook

Maternal Side Effects of Pitocin

http://www.drugs.com/sfx/pitocin-side-effects.html

Submitted by Guest Editor Debora Harvey, Patient Navigator LLC

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Easter Seals Project ACTION and the American Medical Association have a new pocket guide for patients considering transportation options before or after a medical procedure.

The Planning for Transportation After Medical Services pocket guide is available in English and Spanish. It provides information and tips about planning for transportation, the types of transportation available, considering how your health status affects the type of transportation you choose, and also includes a place for notes and phone numbers.

You can download or order print copies of the brochure from the American Medical Association webpage for free.

Guest Editor:  Lucinda Shannon, Easter Seals

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For example, instead of a surgical procedure generating multiple claims from multiple providers, the entire team is compensated with a “bundled” payment that provides incentives to deliver health care services more efficiently while maintaining or improving quality of care. It seeks to align the incentives of those delivering care, and savings are shared between providers and the Medicare program.for acute, inpatient hospital services, physician services, outpatient hospital services, and post-acute care services for an episode of care.

Increasing the threshold for the itemized deduction for unreimbursed medical expenses from 7.5% of adjusted gross income to 10% of adjusted gross income; waives the increase for individuals age 65 and older for tax years 2013 through 2016.

Increases payments to primary care doctors treating Medicaid patients and more funding for preventative services.

For a full timeline of all the changes, click here.

As always, you need to keep up with these ongoing changes.  Good sources are the  Government site and Kaiser Family Foundation.

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“Clinical Cancer Advances 2012: Annual Report on Progress Against Cancer” features 87 studies, 17 of which have been designated “major advances,” meaning these advances are considered practice-changing and had to have been published in a peer-reviewed journal and/or report on a treatment that received FDA approval in the past year.

Major advances in 2012 were achieved in the areas of:

Overcoming treatment resistance: too often, certain cancers respond to initial treatment but eventually develop resistance and grow. Research reported in the past year brought new, effective options for several difficult types of tumors.

Personalized Medicine: Oncology is rapidly transitioning to an era where patients receive treatment tailored to the unique genetic make-up of their tumors. Researchers now know that even subtle genetic differences can make one tumor responsive and another resistant to the same drug.  One example is the Cancer Genome Project.

New results from this federally funded cancer research initiative revealed potential new drug targets in colorectal cancer, identified biological processes critical for cancer cell survival, and proposed innovative ways to predict whether chemotherapy would be effective in patients with ovarian cancer, based on tumor biology.

Cancer Screening and Lifestyle: About one-third of all cancer cases could be prevented, primarily through lifestyle and dietary changes, or by early detection through screening. This year, researchers gained important new insights into screening, especially for colorectal and lung cancers.

New FDA Drug Approvals: Based on encouraging results from large clinical trials, the U.S. Food and Drug Administration approved seven new anti-cancer drugs and expanded indications for five existing agents between October 2011 and October 2012.

The approvals bring new treatment options for patients with certain forms of myeloma; leukemia and lymphoma; breast cancer; skin cancer; prostate cancer; gastrointestinal stromal tumors; colorectal cancer; kidney cancer; and soft-tissue sarcoma.

If you are interested in keeping up with cancer breakthroughs, I encourage you spend some time looking at the 2012 report or this summary.  The ASCO website is also a valuable and trusted source on cancer with information on many types of cancer, diagnoses, treatments and the constellation of issues related to a cancer journey.

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This conclusion comes from a fresh analysis of initial raw data that had been collected by 29 studies previously conducted in Germany, Spain, Sweden, the United States and the United Kingdom.  Collectively, these past investigations had involved nearly 18,000 patients.  The meta-analysis took six years to complete.

The meta-analysis included studies that compared acupuncture with usual care, like over-the-counter pain relievers and other standard medicines. It also included studies that used sham acupuncture treatments, in which needles were inserted only superficially, for example, or in which patients in control groups were treated with needles that covertly retracted into handles.

The researchers, led by Dr. Andrew J. Vickers, attending research methodologist at Memorial Sloan-Kettering Cancer Center in New York and the lead author of the study, found that acupuncture outperformed sham treatments and standard care when used by people suffering from osteoarthritis, migraines and chronic back, neck and shoulder pain.

“This has been a controversial subject for a long time,” he told the New York Times.  “But when you try to answer the question the right way, as we did, you get very clear answers. “We think there’s firm evidence supporting acupuncture for the treatment of chronic pain.”

The National Center for Complementary and Alternative Medicine (NCCAM) of the National Institutes of Health sponsored the study.  You can learn more in the NCCAM Spotlight and its acupuncture information page.

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As I sat in the doctor’s office, hearing that my wife had mesothelioma, I couldn’t believe it. We had just celebrated the birth of our one and only child, Lily. How could such a moment of joy be crushed so swiftly? I looked into Heather’s face and felt tears begin to sting. I didn’t know how we were going to get through this.

On the verge of breaking down, I sat in the office as doctors began to raise questions over our options. We had to make medical choices that would affect so many things in the future. I didn’t know what were the right choices and couldn’t even really think about what we should do when I was so emotional. Still, we had to make those choices, overwhelming as they were. It was the first of many times during my wife’s mesothelioma treatment that I had to help make impossible decisions while facing emotional turmoil.

For a while, I was angry, and I lashed out with profanity for no particular reason. I realized that I had to stop acting this way if I was going to be a pillar of strength for my family. Heather and Lily needed me as a rock, and I couldn’t let them see how scared I really was. Over time, I learned how to be the stable source of hope and optimism that my family needed.

After the diagnosis, every day was a full day of making those tough decisions. I had to learn to prioritize or I could never get everything done. Without the help of friends and family, I think that I wouldn’t have finished anything on those to-do lists. I’m so grateful for the wonderful people in our lives that reached out to us in our time of need and truly made a difference.

The most difficult time for me was when I didn’t see my wife or daughter at all for weeks on end. For two months, I worked and lived alone, as my wife underwent surgery in Boston, and then went to stay with her parents in South Dakota, where Lily had been during the operation. The surgery was very risky and invasive, but if successful would greatly improve my wife’s mesothelioma prognosis. My wife stayed in South Dakota to recover and prepare for the next phase of her mesothelioma treatment, which included radiation and chemotherapy. I, on the other hand, had to remain behind to work and take care of our home.  It was torture to be away from them for so long, but it was the right choice for my family at the time.  There was no way I would have been able to provide Heather and Lily with the care they needed, while still working to support my family. Of all the tough decisions that cancer forced on us, this was by far the hardest.

The one time I got to see them, I almost didn’t make it. I drove 11 hours in a snowstorm, sleeping in my car for a few hours while the plows cleared the roads, just to see them for a few hours on Saturday and Sunday before heading back to work on Monday. It was a long grueling trip for a few precious hours with them, but it was worth every second.

It was difficult not to see my family, but I never regret the decisions that were made. I learned valuable lessons throughout my experience. I learned how to control my emotions, accept help from others and take comfort in being able to make tough decisions. Today, my wife is healthy six years later and we have a beautiful family. I can only say thank you to those who helped and hope that others can pull through as well as we did.

Here is a video you can watch to learn more about how to help and raise awareness: 

www.mesothelioma.com/heather

Submitted by guest editor Cameron Von St. James

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One doctor in Baton Rouge, Louisiana, Dr. Lee Montgomery, uses it for follow-ups or to evaluate minor problems. He says it is not appropriate in a situation where a patient requires a diagnosis, and certainly in any emergency situation. But it’s one way he enables some of his patients, who otherwise couldn’t afford it,  to access his care because it costs a fraction of the price of a regular office visit. If you pay $30 per month for his membership program, Skype visits cost just $10.

But Skype isn’t all about reducing costs. Dr. Spero Theodorou, a plastic surgeon from New York, uses it as a screening tool to determine whether potential patients are likely to be good candidates for a cosmetic procedure called SmartLipo. He uses it not to reduce costs, but as a time-saving tool for his patients.

Dr. Loren Olson, a psychiatrist from Iowa, practices at six different sites, including some which are inner city. He estimates that approximately 50% of patients with serious mental illness are not accessing healthcare services, so Skype visits present a new opportunity for at least some of those patients to get the care they need. Skype visits aren’t as intimate as in-person consults, but for some patients, the alternative to Skype visits is not visiting at all. And he once had a patient inadvertently ask for a glass of water during a Skype session, so in his experience, patients can become as immersed through Skype as in-person.

Right now, most insurance carriers won’t pay for Skype visits, but that may change in the future.

Submitted by Dave Schlosser, Patient Navigator LLC

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Patient navigation and advocacy as an emerging profession are gaining attention, both in the media and in the popular lexicon, because what we do fills in so many gaps in the current American health care system.

The names for this work may vary (patient advocate, navigator, health care advocate or consultant, medical advocate) but the basic idea is the same.  We work with patients and families to help them at many points along the health care continuum:  disease research, insurance problems, finding doctors, understanding treatment and care options, accompanying them to visits, serving as coach and quarterback of their health care team, working with family members and caregivers, mobilizing resources, managing medical paperwork and almost anything else you can think of.

Not every advocate does all of these things, and there is no single business model or list of services.  Some advocates only work with senior citizens, others only with cancer patients or others only to solve medical billing problems.  It depends entirely on the individual’s business and practice.

Key Developments

In August 2009, the National Association of Healthcare Advocacy Consultants NAHAC was founded by Joanna Smith in Berkeley, California because it made sense to form a professional association for this new type of work.  I was a founding member of NAHAC, its first Vice President and since March 2012 I have been the President of NAHAC. The Association seeks to professionalize the emerging private patient advocate industry and to educate consumers. NAHAC is a non-profit educational association.  Members must abide by our Code of Ethics, which in August 2012 was cited as a model by the American Medical Association. The Association held national conferences in 2009, 2010 and 2011; our fourth meeting will be in November 2012 in Boston.  This year’s theme is “The Leading Edge of Reform:  Roles and Goals for Healthcare Advocates.”

NAHAC membership is open to those who are interested in the field of healthcare advocacy.  They may be prospective advocates, medical professionals, consumer advocates, academicians, researchers or people involved in policy and legislative efforts.  I encourage prospective advocates to join NAHAC to learn and to become part of our growing network.

Another key development is a company called AdvoConnection,  founded by Trisha Torrey in 2009 to create a national directory of patient advocates and a way for consumers to find them.  Since then, AdvoConnection has added many marketing and business development services for its members.  Trisha has written extensively on the business side of becoming an advocate.  Her recent summary of the evolving work of advocates is useful and contains other links to learn more.  She offers a membership for folks considering this profession.

The Patient Protection and Affordable Care Act (health care reform law signed in 2010) is now accelerating growth of both the advocacy profession and advocacy education because it mandates new consumer protection initiatives and allocates new funding to support ombudsmen and navigators.  State and Federal health care exchanges that be launched in 2014 include provisions for navigators to help consumers evaluate, choose and enroll in health insurance policies.

The Landscape

But to those just hearing about patient navigation or advocacy for the first time (and for many of you realizing that what you’ve been doing all these years has now been given a name),  I want to paint a brief picture of the larger “navigator” landscape in which advocates work.

Hospitals

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays.  Hospitals usually require nursing degrees and frequently work with breast cancer patients (because there is funding available from private foundations such as Susan G. Komen).

In most cases, these hospital-based navigators primarily manage the patient’s needs during the hospital stay and discharge planning and they work for the hospital.  They usually also only refer to services within the hospital system that employs them.  This is in contrast with private navigators, who work for their client and stay with them well beyond a hospital visit.

Organizations

The American Cancer Society offer cancer patient navigators in some cities, among other programs. 

The National Institutes of Health, National Cancer Institute is funding several patient navigator pilot projects across the U.S. in under-served and minority areas and trains navigators working in those projects.

Much of this work is based on the model set by the pioneer in breast cancer patient navigation  Dr. Harold Freeman in Harlem to develop community-based navigator programs.  His program offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

The Patient Advocate Foundation provides free services to some individuals and is also a leading voice on the national health policy stage.

Many national disease-specific advocacy organizations provide some advocacy help.

Training, Certification and Credentials

Patient navigation/advocacy is a new undertaking that has really gained traction over the past three years.

The key point is that there is no nationally recognized license, credential or certification at this point in time.  Patient advocates are not regulated by states nor is there any credentialing requirement for someone to say they are a patient advocate or navigator.  If you are considering a certificate or training program, please read the important article posted here that goes into more detail.

That being said, there are plenty of organizations and institutions offering some kind of patient advocacy certificate or credential.  Most have sprung up recently. Here is the most complete training program list of which I am aware compiled by AdvoConnection.

I am listing some of these programs but I have no recommendation or insight on most of them.

The University of Wisconsin at Madison Center for Patient Partnerships  Madison offers classroom, clinical and online education in consumer health advocacy.  I am personally familiar with this program and recommend it highly.  The Center also provides free advocacy services locally.

The University of Miami offers the nine-month Alfus Patient Advocacy Online Certificate Program.

The oldest formal health advocacy program in the United States, the Sarah Lawrence College Master’s Program prepares students for a variety of types of advocacy careers, including assisting individuals, focusing on community health, or working in health policy.

Dr. Harold Freeman’s program in New York City offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

The Integrative Medical Clinic Foundation and Sonoma State University in California offer a Patient Navigator Certificate Program with an Integrative Health specialty.

I have personally taken the credentialing program offered through the Society of Certified Senior Advisors and recommend it highly.  For anyone planning to work with the elderly in any capacity, this training  will help you immensely.

Healthcare Liaison offers training workshops for how to become a patient advocate as well as a full credentialing program for medically trained individuals.

Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training for integrative cancer care.

What Does It Take To Do This Work?

Most of us who do this work come to it through our own experiences dealing with the health care or elder care system (whether as a patient, caregiver, nurse, social worker, etc.)  In most cases, there is no specific background or education that is required, except for clinically-based positions.  I have found that a passion for helping others, good research, communication, interpersonal and organizational skills as well as the ability to be creative in finding resources and solving problems are what it takes.

However, earning a living from this work is a different story.   Patient advocate Trisha Torrey wrote an excellent article about job prospects for patient navigators/advocates.  My basic advice to folks is that unless you have another source of income, don’t expect to earn a living wage quickly if you set out on your own.

For more on setting up an advocacy business, you can start here.

How To Join Our Efforts Now

In order to connect folks throughout the U.S. who are interested in this field, I have formed a virtual “Patient Navigator” working group through LinkedIn, the professional  networking site.

Please consider joining my LinkedIn group as we collaborate to build this profession.  Just go to LinkedIn to set up a profile and then ask to join the Patient Navigator group. Please include an explanation of why you’d like to join the group.  This way I can get to know allies around the country and hopefully grow our network and collaboration.  It’s a good way for everyone to make contacts.

Please add your comments or additional information to this post!

Thank you.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

erussell@patientnavigator.com

August 27, 2012

P.S.  If you are interested in how I became a navigator as a second career, you can read a March 2011 profile in MORE magazine that offers more information both about my own journey and about patient navigation generally.  A radio and press interview I’ve given are posted on the Patient Navigator homepage to further elaborate on patient navigation as a new field offering services on many levels.  In addition, there are other media references that can help you learn more about patient navigation.

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The non-profit National Association of Healthcare Advocacy Consultants (NAHAC) is hosting its fourth annual national conference on November 2-3 in Boston, Massachusetts. This year’s theme “The Leading Edge of Reform: Roles and Goals for Patient Advocates” speaks to the growing need for advocates to shape health policy reforms and to help and teach consumers to find their way through our complicated healthcare delivery system.

As in previous years, this is the most important education and networking opportunity for healthcare advocates and patient navigators.  Members of NAHAC will receive a discount on registration but non-members may also attend.  Members of the public will be allowed to participate in our Saturday, November 3 sessions.  Space is limited, so register soon.

Our keynote speaker will be Rushika Fernandopulle, M.D., a medical reformer who has experience working with the most progressive health systems. His address “Building a New Model of Primary Care” will show advocates what roles they may have in new delivery models being implemented through healthcare reforms.

The current agenda of plenary and workshop session, to which more will be added, includes:

What’s Next for Healthcare Reform?” by Michael Miller, Director of Strategic Policy, Community Catalyst

“The Patient-Centered Medical Home,” by Maury McGough, M.D.

“Getting Past the Gatekeepers – How to Communicate and Collaborate with MDs, Nurses and Medical Staff” by Dana Wiltsek, Social Worker and Health Advocate

“When and How Should You Discuss Palliative Care Options with Your Clients?” by Dr. Eve Chittenden, Harvard Medical School Institute for Palliative Care

“Introducing your Clients to Mind-Body Medicine” by Peg Baim from Benson-Henry Mind Body Institute

“How to Solve Health Insurance Problems and be a Hero to your Clients” by Tina Lamont

“Transitioning to Independence” by Nell and Samuel Kief

“Leaving the Hospital – Advice for Transitions in Care” by Cheri A. Lattimer, RN, BSN

“New Frontiers in Cancer Research” by Christopher G. Azzoli, M.D., Massachusetts General Hospital Cancer Center

Don’t miss this unique opportunity to learn and connect with the best in the business.  For more information, check out the NAHAC website and registration.  Space is limited.

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