Disruptive Women in Health Care » Access

Life in the Trenches of Health Insurance Business: How to Make Sure Your Surgery will be Covered

Stephanie Cohen — Mon, 06 Sep 2010 13:00:03 +0000

By Stephanie Cohen.

This month’s health insurance issue: Linda is having surgery in the morning, but at 4 p.m. the afternoon before, she gets a call from her HMO requiring her to post a $400 advance deposit — or the surgery is off. What should she do?

The situation: Our client Linda was scheduled to have surgery using a surgical group that had negotiated fees with her HMO carrier. Besides being told to post $400 in advance, she was told she needed to sign a form stating she would pay whatever fees the carrier would not pay to the doctor.

This came despite the fact that the surgeon was in her HMO network and Linda had gotten the proper referral and authorization from the carrier. In fact, her policy dictates that when a provider has signed a contract with an insurance carrier, the patient is held harmless from all fees associated and cannot be asked for additional payments other than applicable copays, deductibles, and coinsurance. In this case, the policy had a $20 doctor copayment and 100% coverage, with no hospital copayment.

Linda called us in a panic, and we immediately phoned our contact at her HMO. Due to the late hour, our contact couldn’t do anything until the following morning, when she would have a representative from provider relations step in. And after a long discussion with the insurance company, Linda did not have to post the deposit and did have a successful surgery.

The solution: Don’t assume anything before having surgery. Get on the phone and make sure you are covered.

1. Contact the insurance provider and verify all benefits. Always get the name of the representative you talk to, as well as the department name and number. Try to speak with a supervisor. Also, note the date and time you had the discussion, since all calls are recorded and can be pulled to make sure accurate information was given.

2. Get all pre-authorization agreements in writing. Typically, the doctor’s office will call, but you should insist on getting it in writing, too, so you can be sure everyone involved in the surgery — the surgical center, hospital, anesthesiologist, doctors, etc. — is covered by your health insurance plan.

3. Understand your policy and be clear about the items that you may be required to pay for. Many hospitals, surgical centers, radiological providers, and labs will send you a bill in addition to submitting it to the insurance company. Remember:: Never pay a bill unless the insurance company has received it first and re-priced it (including applicable discounts) and until you have received evidence of benefits that match the bill.

The painful truth: Unfortunately, the system is broken. Insurance carriers, doctors, and patients will continue to eek out whatever they can from the health-care and insurance system until new policies are in place that make it clear exactly what the contract is that they are entering into. If anything is unclear in your agreement, a new one needs to be worked out that will include cost, payment, and what insurance covers.

If we were the Health Insurance Ambassadors: We would require that all doctors notify the patient about the exact cost of the surgery before the procedure. The patient would then have a full understanding of the costs associated with the surgery and the doctor would receive the appropriate payment.

In defense of doctors, we would also change how they take payments. Doctors do not ask for money upfront. They provide a service and hope that they will receive payment afterward. Perhaps they should swipe a credit card before the procedure or at the time of an office visit.

Originally posted on http://www.beinkandescent.com/articles/251/scott-golden-and-stephanie-cohen.

Doctors Are Bad for Your Health

Archelle Georgiou, MD — Thu, 26 Aug 2010 13:48:39 +0000

Disruptive Women Archelle Georgiou was interviewed for the blog below, originally posted on August 21st on Big Think. In order to be a patient advocate you need to be well informed of the issues, this post reminds us of that:

You may want to think twice before your next visit to the doctor’s office. According to Dr. Barbara Starfield’s now-famous study, iatrogenic deaths (those resulting from treatment by physicians or surgeons) are the third leading cause of mortality in the United States, resulting in the loss of 225,000 lives per year. Of that total, nosocomial (hospital-acquired) infections kill 80,000, physician errors claim 27,000, and unnecessary surgery results in 12,000 deaths.

But iatrogenic errors aren’t the only reason people should avoid hospitals, says physician and health care administrator Archelle Georgiou. She tells Big Think that relying on doctors may actually shorten your lifespan. Georgiou bases this idea on her studies of the earth’s so-called “blue zones,” isolated communities around the world whose inhabitants live longer and healthier lives than the greater populace.

In the Greek blue zone, the island of Ikaria, inhabitants are more than 4 times more likely to live to age 90 than Americans are—yet there is virtually no health care infrastructure. Georgiou tells us: “There are no hospitals or major surgery capabilities…. People needing emergency care are transported by helicopter to Samos (a neighboring island), and all elective surgery is done in Athens.”

A procedure like an arthroscopy or a hysterectomy that would take 3-5 days in the U.S. consumes 3-5 weeks for Ikarians, who must relocate to Athens for the procedure and convalescence. Therefore, “their threshold for elective surgery is significantly higher than ours,” Georgiou says. The result is that people depend on themselves rather than doctors for non-life threatening ailments. And, knowing that health care is so inconvenient, Ikarians take greater care not to get sick—they eat a healthy diet rich in vegetables and exercise daily.

Our greater access to health care (discounting, of course, the millions of uninsured Americans) might make us more likely to live unhealthfully. “U.S. culture is steeped with a ‘find it and fix it’ mentality,” Georgiou tells us. Rather than try to prevent illnesses, we rely on our doctor’s ability to fix what ails us. And the result is that “we spend significantly more on health care than any other nation but without the benefit of improved outcomes or longevity.” In the U.S., our life expectancy is only 78, yet we spend 2.5 times more money per capita than Japan, the country with the highest life expectancy (82.6 years). One-half to one-third of the $2.2 trillion per year America spends on health care is simply unnecessary, says former AMA chairman Raymond Scalettar.

Our reliance on doctors may be tied to our faith, Georgiou believes. According to the World Values Survey, the U.S. ranks high on the traditional versus secular-rational values scale (in between Ireland and Northern Ireland). “Our nation’s traditional values make us more religious, more deferential to authority, more paternalistic,” she says. In other words, the impulse that causes us to listen to our pastors is the same one that makes us heed our physicians. “As a result, Americans have abdicated personal responsibility and delegated the responsibility for their health to their doctor and to the health care system. We don’t ask questions, we just do what the doctor says.”

Takeaway

One in every twenty patients contract potentially fatal infections in hospitals. In 2002 there were nearly 38 million hospital visits in the U.S., placing the number of hospital-acquired infections around 1.9 million per year. Weaning ourselves off our health care addiction would not only help reduce this number but also help rein in the nation’s ballooning health care costs.

Why We Should Reject This

What is true on the tiny island of Ikaria, might not hold true in a country as big and diverse as the U.S. Dr. Steven Schroeder, a professor of health and health care at UCSF, says that poverty, rather than a over-reliance on doctors, is to blame for our poor showing in global health comparisons. Poor Americans are four times more likely to die an early death than the rich. It is safe to assume that many of these poor are among the 45 million uninsured in our country, meaning that their access to health care, like the Ikarians, is restricted to emergency room care (the most expensive kind of health care). To be sure, other behavioral aspects of their lives might be to blame for their lower life expectancy, but over-reliance on doctors is surely not the cause.

And while it may be true that Americans generally should lead healthier lives, studies have shown that regularly visiting the doctor is a potent weapon against the second leading cause of death in the United States: cancer. Cancer screenings can catch the disease in its early stages, increasing a patient’s likelihood of long-term survival. And people who have routine check ups are more likely to undergo these screenings. According to the American Cancer Society, campaigns to increase usage of Pap testing and mammography have contributed to a 70% decrease in cervical cancer incidence rates since the introduction of the Pap test in the 1950s as well as a steady decline in breast cancer mortality rates since 1990. But more can still be done: the National Cancer Institute says that of the estimated 569,490 who will die of cancer in the U.S. in 2010, as much as 35% of these premature deaths could have been avoided through screening.

More Resources

— “Is U.S. Health Really the Best in the World [PDF],” a 2000 study published by Barbara Starfield in the Journal of the American Medical Association

— “The Impact of Hospital-Acquired Bloodstream Infections [PDF],” a study published in the Emerging Infectious Disease Journal in 2001

Give Us Our Dammed Data

Regina Holliday — Fri, 13 Aug 2010 13:00:32 +0000

By Regina Holliday. On Thursday night in an office space in Georgetown a crowd was forming. It was an after-hours crowd. The room was filling with advocates, artists, professors, and students. There were doctors, IT professionals, authors, and members of the community. There were mothers, fathers, grandparents and children. They had all come to see an exhibit of art.

This office was the shared space for Clinovations and Osmosis. The wonderful folks at Clinovations had suggested placing one of my paintings in their space to brighten up the blank white walls. Perhaps one of my paintings would support an even greater awareness of the need for patient-centered care. I thought, why stop with one painting why not many? Why not have an entire show and invite people from every facet of health care and beyond? I wanted to create a space for conversation and networking. I wanted people to get together and have some face time surrounded by art.

I envisioned a crowd of people thinking of ways to provide better care for patients everywhere. As I thought about this, I realized that this concept would be the focal piece of the show. Give Us Our Dammed Data is my first crowd-sourced painting, and it features quite a crowd. I wanted to paint a citizen army of patient advocate authors. I knew quite a few from Facebook and Twitter and had read their work. So I asked for suggestions from Dave DeBronkart, Trisha Torrey, Lisa Lindell and Helen Haskell. Between the five us we created a list of potential authors. Helen suggested I contact all of them and ask their permission to include them in the painting. With her help I found their addresses. I really enjoyed the give and take of emailing each author. I explained I wanted to paint them and their books.

And so another crowd gathered in Georgetown on Thursday night. They did not move or laugh. They did not drink wine or nibble the delicate appetizers. Instead, they stared down upon us with sorrowful smiles. In a room usually filled with laptop computers and hushed conversation hung a large painting picturing a crowd of authors. These authors’ books span 15 years, and all of them are telling a very similar tale.

17 authors with weapons in hand stare down upon the viewer. The three panel painting measures 60 inches by 144 inches. It is a very large painting, and yet it is crowded with many who have been hurt and many who have suffered. Every one of them is an author. Most of the authors in the painting took the hurt and outrage they felt about a dysfunctional medical system and channeled that into a book. That book is their shield and their pen is a spear.

These are people who have taken up arms in a battle they had never intended to fight. Note they are dressed only loose robes or hospital gowns. Their feet are bare. They dress as the supplicant or the pilgrim. They are on a mission. For some of the citizen soldiers it has been a very long path.

Journalist Michael Millenson’s Demanding Medical Excellence was published in 1997, and as you read it it is hard to comprehend it was written 13 years ago. It reads like it was written yesterday. So in the far left panel Michael’s back faces the viewer in the piece. The public has not been listening. He is turned toward a fellow advocate who will spread the word. He is speaking to Julia A. Hallisy who looks concerned. And so she should.

This is Julia A. Hallisy, whose daughter, Kate, fought a losing battle with cancer in her short life. In 1997, Julia was well aware of the failings in our health system as she desperately tried to get an oxygen machine so her ten-year-old would be able to breathe as cancer was attacking her brain.

On the right side of Michael stands Janet Lynn Mitchell. In her book Taking a Stand she recounts her battle to walk after enduring 10 knee surgeries. Her many surgeries were due to a mistake during her original surgery. This was covered up and parts of the medical record were altered and “lost.”

Below Janet sits Martine Ehrenclou, author of Critical Conditions. Martine spent over a year guiding both her mother and godmother through medical wilderness. She saw so many hazards and “never events.” She was determined to create a book to help others survive their hospital stay.

To Martine’s left sits Evelyn V. McKnight, author of A Never Event. Evelyn contracted hepatitis along with 857 other cancer patients due to reused contaminated syringes.

Beside Evelyn sits Elizabeth Cohen, Senior Medical Correspondent with CNN. She will soon publish The Empowered Patient: How to Get the Right Diagnosis, Buy the Cheapest Drugs, Beat Your Insurance Company, and Get the Best Medical Care Every Time. She has used her years as a patient and a patient advocate for her family members to help others. Informed by years of reporting medical tragedies as a reporter, she too felt she must write a book.

In the far right panel on the lower right side sits Sorrel King. Hers is one of the sadder stories in this piece. She alone stares out of the frame and seems to make eye contact with someone who must be quite small…. Sorrel lost her daughter Josie. Josie was only 18 months old. Josie was recovering from a bad burn when she died from severe dehydration and unfortunate dose of narcotics. Sorrel knows intimately the importance of patient and caregiver access to medical record. Being able to read the orders in a record can save a life.

Seated behind Sorrel to the left is Lisa Lindell. Lisa wrote 108 Days. In her book she tells a day-to-day account of her successful campaign to keep her husband alive. She was astounded when she read her husband’s medical record. The nurse’s notes specified that she had an “unreasonable” belief that her husband should live. Beside Lisa sits Patrick Malone a malpractice attorney and patient rights activist, who wrote The Life You Save. Patrick lists nine necessary steps to getting the most out of the current medical system. The number one step is: Get a copy of your medical record.

Behind Patrick to his left stands Jari Holland Buck. She wrote Hospital Stay Handbook. She would understand the frustration of Lisa Lindell, as she too, kept her husband alive during his hospital stay.

Beside Jari stands Margo Corbett, the author of The Savvy Patient Toolkit. She became inspired to advocate after she was told her husband may not survive the night. She used all of her talent and past job experiences to create a handy checklist for patient care.

To Margo’s Left stands Carolyn Oliver,MD, who wrote Cautious Care: A Guide to Patients. This was the first patient empowerment book I ever read. Fred Trotter gave me a copy after I asked an access question before the crowd at Connect 2009 in DC. I loved it its simple and clear instructions.

Next in line is Sanjaya Kumar, MD author of Fatal Care. Dr. Kumar is dedicated to the improvement of patient safety and real time collection of data.In the center panel to left stands John James. He lost his son Alex at the age of 19. John was astounded when he read Alex’s medical record. He saw so many mistakes and examples of miscommunication that led to Alex’s death.

To John’s right stands Sandra Gilbert author of Wrongful Death. Her husband died during routine surgery. Her story recounts her efforts to grieve while trying to find out what exactly had happened.

In the center stand the ones who lived. Dave Debronkart author of Laugh, Sing and Eat Like a Pig and Trisha Torrey author of You bet your life, The 10 Mistakes Every Patient Makes complete our 17. They had a very different experience. They got access to their medical records; they fought the system and won. The title of the piece is a play on the words Dave spoke: “Gimme my damned data.” His phrase described the anger and frustration of all of us who have suffered so in a system where a patient sees a record only as an afterthought. I decided to expand on his comment and add an actual dam.

So in the middle of this painting stands a version of Hoover Dam labeled Meaning Use, HITECH. The data may still be dammed, but now it has begun to flow and it is pouring right into a laptop computer. We may have to wait three days, but due to government action, we will get access to our records.

This has been a long post. I may have lost some of you in listing all of the advocate authors. I hope you are still reading for there are two others in this picture.

To the far left stands Clay Shirky author of Cognitive Surplus, and to the right is Melinda Blau, author of Consequential Strangers. They are feeding the pack mules.

Every army must have pack mules. They supply the troops; they carry the supplies and are sure-footed on the mountainous path. If you haven’t read the books I would recommend them to be read together. Melinda reminds us of the power of all the people in our life. It is the friend’s friend who often gets us the job or finds us the right doctor. Clay Shirky informs us of the inherent potential in a world where thousands of people log on and data crunch with no other goal than doing good for others. He sees the future of medicine when it combines with the data aggregation of sites such as Patients Like Me.

So this is the story of Give Us Our Dammed Data. It is a painting that had 17 advocate authors. I could have painted more. I could have covered every wall in the Clinovations office space with advocates who are fighting for us. I stopped with 17.

Why? There are 17 people in 73 Cents. There are 17 pills in another piece at this exhibit, Sutent in a Shadow Box.

And I took up my shield and sword on June 17th 2009. My shield is a canvas and my sword is a paintbrush. I am so glad my art can create a space where these authors can look upon us as the mighty army they are. I am in awe of the work they have done. I hope you will feel the same.

Calling all Patient Advocates

Robin Strongin — Mon, 09 Aug 2010 13:45:21 +0000

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.

Listen to Podcasts of Disruptive Women on Real Women on Health!

Hygeia — Fri, 06 Aug 2010 13:30:03 +0000

Did you miss Disruptive Women bloggers Indu Subaiya, Jane Sarasohn-Kahn, Trisha Torrey, and Regina Holliday this week on the Real Women on Health! Radio series? Or did you hear them, but want to listen again? If so, you can listen to the podcasts now available.

Ensuring Women Get the Care They Need and Deserve

Hygeia — Tue, 03 Aug 2010 14:32:42 +0000

No matter who you are, the Affordable Care Act will help make your health care better. The reforms in the law will help bring costs down and will improve the quality of care for all Americans.

But we know that women in particular suffered under the old health care system and will especially benefit from the important changes in the new law. This was confirmed last week, with the release of a new report from the Commonwealth Fund highlighting how important the new law is for women across the country. The report notes:

Up to 15 million women who now are uninsured could gain subsidized coverage under the law. In addition, 14.5 million insured women will benefit from provisions that improve coverage or reduce premiums. Women who have coverage through the individual insurance market and are charged higher premiums than men, who have been unable to secure cover-age for the cost of pregnancy, or who have a preexisting health condition excluded from their benefits will ultimately find themselves on a level playing field with men, enjoying a full range of comprehensive benefits.

Under the old health care system, a healthy 22-year-old woman could be charged premiums 150 percent higher than a 22-year-old man and many insurance companies treated simply being a woman as a “pre-existing condition.” Many individual market health insurance policies didn’t include maternity care and some states even made it legal for insurers to reject applicants who are survivors of domestic violence.

The new law makes important changes that will help ensure all women get the care they need and deserve. The Affordable Care Act prohibits insurance companies from denying any woman coverage because of a pre-existing condition, excluding coverage of that condition, or charging more because of health status or gender. Being a woman will no longer be a pre-existing condition.

The law will also help ensure women have access to a host of preventive benefits including mammograms and pap smears. If you purchase a new insurance policy after September 23, insurance companies will be prohibited from charging you a deductible, co-payment or co-insurance for these and other preventive services. You can learn more about these new preventive services, and get information about your health care choices at HealthCare.gov.

And beginning in 2014, Americans will have access to a new competitive insurance marketplace. The new marketplace will include health insurance exchanges where millions of Americans and small businesses will be able to purchase affordable coverage, and have the same choices of insurance that Members of Congress will have.

To learn more, read about the benefits of the new law for women.

Orignally posted on http://www.whitehouse.gov/blog/2010/08/02/ensuring-women-get-care-they-need-and-deserve on August 2nd by Tina Tchen who is Director of the White House Office of Public Engagement and Executive Director of the Council on Women and Girls.

Meaningful Use—What’s in it for me?

Pamela Cipriano, PhD, RN, NEA-BC, FAAN — Fri, 23 Jul 2010 20:33:50 +0000

By Pamela Cipriano. On July 13, 2010, the clock started running for eligible providers, hospitals, and critical access hospitals, to become meaningful users of certified electronic health records (EHR). Under the direction of the Secretary of Health and Human Services, the Centers for Medicare and Medicaid, together with the Office of the National Coordinator for Health Information Technology (ONC) released the final rules that lay out the first two years of requirements for eligible professionals to qualify for incentive payments included in provisions of the American Recovery and Reinvestment Act of 2009 through the HITECH act (Health Information Technology for Economic and Clinical Health). View the press conference led by Secretary Sebelius. (Disruptive Woman Regina Holliday, spoke at the press conference)

Seven months and 2000+ professional and public comments later, the final rules lay out a three phase graduated approach of requirements for demonstrating meaningful use of certified EHRs. Since not one stakeholder group is wholly enamored with the rules, they are more than likely equitable and balanced. Listening to the feedback, the ONC made a number of changes from the proposed to the final rules, taking into account concerns about the speed and scope of implementation of criteria to qualify as a meaningful user. Groups across the industry gave faint praise as they acknowledged the greater flexibility in the final rules and an easing of some of the requirements. The phased approach lays out the goal for Stage 1 as capture of data in coded format, Stage 2 exchange of information with emphasis on guiding and supporting care processes and coordination, and Stage 3 improving outcomes by focusing on decision support with improved access to comprehensive patient data.

With quality at stake, the meaningful use incentives tie payments to achieving advances in health care processes and outcomes. The payments are intended to help accelerate use of HIT. Fortunately there is already broad agreement that populating data into EHRs, using electronic prescribing, reviewing and sharing data across providers and settings, and reporting on quality measures has a positive effect on care. Dr. Don Berwick, newly appointed Administrator of the Centers for Medicare and Medicaid, emphasized that the new rules define the use of EHRs that is “meaningful to care and to people,” emphasizing the direct improvement in patient safety, transparency, and access to data resulting in better, safer, and more reliable care for everyone. Certified EHRs help providers know more about their patients, make better informed decisions, and reduce costs of care. Electronic systems can reduce potential for errors, and enable consumers to work with their providers to coordinate and manage their care.

The regulation sets out a road map with requirements for hospitals and clinicians in years 2011 and 2012. Moving away from an all or none achievement of the original objectives, there are now two groups of objectives—a core set of measures (14 for hospitals and 15 for eligible providers) and a menu of ten options from which an additional 5 are selected for implementation over two years. Core elements include basic essential components of an EHR such as vital signs, demographics, active medications, allergies, problem lists, and clinical summaries. Reporting of quality data, assuring privacy and security of data, and electronic prescribing are also expected. The extent of implementation for each measure varies such as percent of orders, or transactions to show how one uses the EHR. Menu options range from drug-formulary checks, to recording of advanced directives, to sending preventive care reminders to patients. A summary overview of meaningful use objectives is provided by David Blumenthal, MD, MPP, ONC, and Marilyn Tavenner, RN, MHA, principal deputy administrator of CMS, in the New England Journal of Medicine.

Up to $27 billion over ten years will be made available to eligible providers and hospitals in a multiyear inventive program to help overcome logistical, technical, and financial barriers. Some say this funding is too modest. It is difficult to shift from legacy paper systems to electronic ones. Workflow patterns and personal habits must change, and there is the real expense of acquiring a system, training staff, and retooling care processes. The American people deserve this upgrade from low tech paper to high tech systems that help even the smartest provider avoid life threatening errors. Clinicians may qualify for payments up to $44,000 through Medicare and $63,750 from Medicaid over a four to six year period. In all, these resources will help fuel the development, adoption, and use of a nationwide system of EHRs.

Using certified EHRs in a meaningful way will lead to improved health care quality, efficiency, and safety. We can expect to see ongoing refinement and new rules in anticipation of Stage 2 and 3 requirements. Hitting the milestones of meaningful use will move the HIT agenda from aggressive and ambitious goals, to reality.

Additional information is available:

1) Complete document on the final rules as published in the Federal Register: http://www.ofr.gov/OFRUpload/OFRData/2010-17207_PI.pdf

2) CMS meaningful use: http://www.cms.gov/EHRIncentivePrograms/

3) Programs HHS/ONC: “Being a Meaningful User” http://healthit.hhs.gov/portal/server.pt?open=512&objID=2998&parentname=CommunityPage&parentid=18&mode=2&in_hi_userid=10741&cached=true

4) Healthcare IT News: “summary overview of meaningful use objectives-core set”: http://www.healthcareitnews.com/news/meaningful-use-objectives-eligible-professionals-hospitals

5) HIMSS meaningful use info: http://www.himss.org/economicstimulus/

6) HITECH Act funded programs: http://healthit.hhs.gov/portal/server.pt open=512&objID=1487&parentname=CommunityPage&parentid=3&mode=2&in_hi_userid=10741&cached=true

Celebrate the 20th Anniversary of the Americans with Disabilities Act

Stephanie Mensh — Wed, 21 Jul 2010 18:36:27 +0000

By Stephanie Mensh. During the next week or so, various Federal, state, and local government agencies as well as consumer organizations will be celebrating the 20^th anniversary of the landmark legislation, the Americans with Disabilities Act (ADA), signed into law on July 26, 1990.

My husband suffered a stroke that resulted in speech and mobility impairments around the time that the ADA became law. The ADA continues to help my husband and family by increasing awareness and accessibility for people with disabilities to fully participate in our community, to go to school, work, shop, movie theaters, restaurants, and hotels, to use public transportation, to access hospitals and health care, and to have a place to call “home.”

The ADA rights also extend to caregivers of people with disabilities. Balancing the demands of a full-time job and taking care of a family member with a disability or chronic illness can be difficult, even with the most understanding employer. Under ADA caregivers, male or female, are protected from job discrimination resulting from real or perceived family commitments.

I remember during an interview for a job found through networking, my potential supervisor — who knew that my husband had had a stroke — asked me how I would manage to travel. I was very proud of my husband’s independence, and assured the supervisor that it would not be a problem. Although I got the job, I realized that discrimination against people with disabilities impacts their family as well.

The Federal Equal Employment Opportunities Commission (EEOC) published guidelines based on the ADA stipulating that employers cannot give different treatment to caregivers during the hiring process, job reviews, work assignments, or promotions based on stereotypes of caregiving responsibilities. Section E and F of the guidelines, and examples 17 and 20 relate directly to caregiver protections under the ADA. For a copy of the “Enforcement Guidance: Unlawful Disparate Treatment of Workers With Caregiving Responsibilities,” visit the EEOC website at: http://www.eeoc.gov/policy/docs/caregiving.html

To join the celebration of the ADA’s 20^th anniversary, visit any of these websites:

http://adaanniversary.org

http://www.ada.gov

http://www.ncd.gov

http://www.disability.gov

http://www.ncil.org

Now You See Them…Now You Don’t: Health Care Transitions for Young Adults with Chronic Medical Conditions and Disabilities

Santi KM Bhagat, MD, MPH — Fri, 16 Jul 2010 10:51:32 +0000

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.

That night had a happy ending– I had my first migraine, not a retina detachmen,t but I couldn’t help but be terrified of what could have happened had I been really sick and I had not had adult medicine doctors who understood my disease.

A few months later it was time to find a new orthopedist because I had a nagging, worsening hip pain. This time I had traveled six hours by car with my Mom in tow to go see an expert in adults with arthritis.

The Orthopedics department was brand spanking new and is entire separate wing of the hosptial, Mom and I decided this was a good sign. Mom and I had taken two bets that morning, one, that I would be the youngest patient by 4 decades at least and two that the doctors would have no clue what Kniest was…I lost the first bet in the waiting room, although the majority of the patients were over the 4 decade line, there was a football player who destroyed his knee and a lady about Mom’s age.

I was absolutely shocked when we were called in exactly at our appointment time, seriously Mom and I nearly passed out from shock. This may in fact be the first orthopedist appointment ever that we were actually called back on time. I passed the tech my X-rays and sat down in the consult room. The consult room was conveniently located right across the hall from the X-ray reading room, putting mom and me in front row seats for the circus.

A crowd began to gather, Mom and I exchanged knowing glances, shoot…Then because the circus needed some PR, one of the white coats, exclaims quite loudly “Holy Moly, would you look at that…” Even more people gathered around my films. I put my face in my hands. Mom sighed and said “We should sell tickets.”

That was my transition experience. I was either a circus side show and/or no one had a clue how to care for me. The Google circus was terrifying, frustrating and completely unnecessary. There is a better way to do transition both for the patients and the doctors.

Today I had a totally different experience . I just moved to a new city and am starting my first job as a pediatric resident (aka intern…aka doctor in training). Upon moving here I was referred to the Skeletal Dysplasia TRANSITIONAL clinic at the childrens hospital. I was a little skeptical at first because I had not seen pediatric doctors in five years. Would they treat me like a little kid? Would they expect me to bring my parents? (who live 500 miles away) Would they bring in 50 residents/medical students (my colleagues?!?!) to see the new weird case?

I was led to a cheerful exam room with murals and bright colors. But despite the pediatric surroundings I was treated as an adult. Only one doctor came to see me and he was well versed in my disease both in childhood and in adulthood. My physician spent over an hour with me reviewing my current health concerns, my past history and discussing all the exciting things that go with starting my first real job. He spoke to me as a partner in my care and encouraged me to participate in coming up with a treatment plan. He helped me line up referrals for orthopedics and an eye doctor in town. He also helped me come up with a plan to navigate some of the more challenging aspects of my new job. We came up with an emergency plan if I get hurt or sick so that we make sure I am cared for by doctors who know about my disease and know me.

It wasn’t rocket science, it wasn’t even an act of Congress, what happened today happened because a small group of physicians, parents and young adults in the region have realized that children with CMCD here grow up but rarely do they grow out of their need for specialty care. For a variety of complicated reasons, adult medicine rarely gets enough training in treating childhood onset diseases much less helping young adults thrive as independent and self sufficient. It takes clinics like the one I visited where pediatric and adult doctors work together to care for young adults with CMCD. We have a looong way to go before this is the norm but as a patient and as a doctor I am excited about being part of the movement that makes it happen.

Because no one should have to be a part of the Google circus.

Could the FMAP Extension be the Latest Victim of the Cooties

Rozalynn Goodwin — Tue, 13 Jul 2010 14:18:18 +0000

By Rozalynn Goodwin. Yes, I said “cooties.” You remember that childhood imaginary disease believed to spread through contact with those infected or worse, those of the opposite sex. The cooties epidemic has spread to Washington, DC, and has politicians frightened to work across the aisles for the greater good. I heard that the lesson: “They Have the Cooties” takes up most of the first day of orientation for newly elected congressmen and senators. This class perfects neophytes’ skills in murdering any attempts for bipartisanship.

Cooties can be deadly for a politician. Just look at SC’s latest casualty, outgoing Congressman Bob Inglis. His independent thinking and willingness to sometimes side with the other party were clear symptoms that he had been infected, and now he’s being sent home to be quarantined. Senator Lindsey Graham’s case of the cooties is thought by some to be in the advanced stages.

Cooties are not only taking out politicians who think for themselves and for the good of America. Cooties are also killing good policy. The six-month extension of the FMAP (Federal Medical Assistance Percentage) increase appears to be the latest victim. This temporary fiscal relief for states was first provided through the American Recovery and Reinvestment Act (ARRA) back in February 2009 to prevent the decimation of state Medicaid programs at a time of rising unemployment and increasing Medicaid rolls. This relief runs out the end of 2010 (right in the middle of most states’ fiscal years), and therefore produces a significant fiscal problem for state budgets. Just last week, several governors from across the nation gathered in DC to lobby for this extension. Guess whose governor was not there…

Earlier this year, it was widely assumed that this extension was a done deal, but Congress has been punked into inaction by some primary election results across the country that some believe reflect voters’ frustration with government spending.

Now don’t get me wrong. I understand the need to be conservative in tough economic times, but I also understand the need to stimulate the economy and give our most economically vulnerable a helping hand. It’s funny how we can bail out financial institutions and their wealthy executives, and turn a deaf ear to those truly suffering.

If FMAP is not extended, not only will SC’s disabled, very poor and senior citizens lose access to health care services, our state’s struggling economy will lose as well. SC stands to lose over $200 million in federal dollars that could help patch our frail Medicaid budget and stimulate our economy with high-paying healthcare jobs and the accompanying exchange of goods and services. These enhanced FMAP dollars would also help fund prescription drug coverage for low-income citizens and those with HIV and AIDS. But who cares about folks with HIV and AIDs? They are just a bunch of minorities and homosexuals whose choices have caught up with them, right? And who cares about the poor? Heck, we have had candidates build political campaigns on picking fights with those lazy, shiftless stray animals, and Medicaid is just another one of those welfare programs perpetuating our “culture of dependence,” right?

NEWSFLASH: Ain’t nobody getting rich off Medicaid (improper English intended)!

Right now, SC’s Medicaid program only covers the very poor in our state. A single parent making a little over $7,000 a year is too rich to qualify for Medicaid in SC, and if an adult without children makes just $5 a year, they cannot qualify for Medicaid because they are categorically ineligible. Some confuse the typical Medicaid recipient with the infamous Reagan-era “welfare queen.” What a ridiculous comparison. Medicaid recipients don’t receive checks. They receive access to vital health care services like primary care, prescription drugs, screenings, and hospitalizations.

If Congress fails to extend temporary relief through FMAP, states across the nation will see drastic Medicaid cuts, as their budgets are already strained in this economy. These cuts will include reductions in benefits, increases in out-of-pocket health costs for Medicaid enrollees, and lower payments to health providers—which will only decrease health care access and delay care for the most vulnerable, costing all of us more in the long run.

Let’s inform Congress that cooties are only imaginary, and encourage them to work across the aisles to garner the votes to pass this important, temporary extension. The FMAP extension is good for South Carolina and good for America.

Solutions To Scale: Proven Health Care Models for Primetime

Hygeia — Thu, 24 Jun 2010 14:04:04 +0000

By Joy Burwell

You’re Invited to

“Solutions To Scale: Proven Health Care Models for Primetime”

Wednesday, June 30, 2010

9:00 – 11:30 am

Breakfast will be served at 8:30 am

Kaiser Family Foundation

Barbara Jordan Conference Center

1330 G Street, NW

Washington, DC 20004

Raise the Voice, a program of the American Academy of Nursing supported by a grant from the Robert Wood Johnson Foundation, showcases the work of “Edge Runners” – nurse researchers and experts who have developed proven care models and interventions that demonstrate significantly improved clinical outcomes and cost savings. The Edge Runners will share their experiences to highlight what does and does not work for consideration by federal and state agencies during health care implementation.

Welcome:

Diana J. Mason, PhD, RN, FAAN, Editor-in-Chief Emeritus, American Journal of Nursing
The Honorable Robert Borski

Opening Remarks:

Ken Thorpe, PhD, Department of Health Policy and Management, Rollins School of Public Health, Emory University

Panel One:

Tina Johnson, CNM, MS, Practicing Nurse Midwife
Tine Hansen-Turton, MGA, JD, CEO, National Nursing Centers Consortium, Executive Director, Convenient Care Association, Raise the Voice Edge Runner
Eileen M. Sullivan-Marx, PhD, CRNP, FAAN, Advisor, Living Independently For Elders (LIFE), Raise the Voice Edge Runner
Deirdre Baggot, BSN, MBA, Administrator for Cardiac and Vascular Services, Exempla Saint Joseph Hospital, CMS ACE Demonstration Site for Bundling Payments
Sandra Haldane, BSN, MS, RN, Chief Nurse, Indian Health Service

Panel Two:

Randall Krakauer, MD, FACP, FACR, Head of Medicare Medical Management, Aetna
Susan Reinhard, PhD, RN, FAAN, Senior Vice President, AARP Public Policy Institute, Chief Strategist, Center to Champion Nursing In America
Matt Salo, Director Health and Human Services Committee, National Governors Association

Moderator:

Scott Hensley, National Public Radio

RSVP: Joy Burwell 202-263-2971 or jburwell@amplifypublicaffairs.net

Sponsored by the American Academy of Nursing’s Raise the Voice Campaign. Raise the Voice is supported by a grant from the Robert Wood Johnson Foundation

April 2010 Man of the Month: Peter Kithene

Hygeia — Mon, 05 Apr 2010 16:15:55 +0000

After watching his parents and six siblings die from undiagnosed, untreated diseases, Peter Kithene vowed not to let that happen to other families. “I want to give kids their parents and give kids their lives,” he tells Disruptive Women.

While a college student at the University of Washington, Peter opened the first Mama Maria clinic in his home village in Kenya. He now has two clinics, three small out posts and just finished a business plan to open a third.

He wants all people in Kenya to have accessible health care.

Disruptive Women is proud to name Peter our April man-of-the-month.

He took a few minutes to speak with Disruptive Women’s Wendy Grossman.

Q: I read that by the time you were 12 — both your parents and six of your siblings had died from undiagnosed diseases? Is that correct?
A: Yes.

Q: What happened?
A: They got sick. At that time I didn’t know a lot. I was a kid myself. The kids got sick and died when they were young.

What I saw, what stayed with me until today, was my brother (who is still alive) almost died. He got very sick and had meningitis. Nobody knew what was going on. There were no laboratories to take him. When his illness got very serious, we traveled very far with him. And they said, ‘This kid has two hours to live. If we don’t get him to the hospital now, he’ll die.” They had an ambulance 15 miles away, and they drove across the border into Tanzania to a hospital there. And they treated him and treated the meningitis. Then he ended up losing his hearing and speech — he became deaf. This was a really talkative kid.

I just saw that, he could have died. If there wasn’t an ambulance and a reliable place to take him, and a hospital, he wouldn’t have lived. He lived. And after I opened the clinic, I saw kids coming in with the same illness, the meningitis. But we are able to treat it, and they got to go home and they don’t become deaf like my brother.

And lives are saved.

The other ones who died I don’t know what they died from. And then my parents also died. They really wanted to go to hospital. They needed the care, but there was no place to take them. Or the places they could go were just too expensive. Nobody could afford that.

Q: Is it just you and your brother now? Or do you have other siblings?
A: Me and my two brothers and one sister.

Q: Wow that’s a lot of kids your parents had. Tell me, why did you start the clinic Mama Maria? I read that your work is, in a way, avenging their deaths.
A: Avenging their death. No, I don’t think it’s avenging. It’s just giving life opportunities to people. I got a chance. I had the dream after my parents passed on — my dream as a kid was to get a place people could go to when they’re sick and get treated.

With that dream in mind, I worked so hard. Every step I made along my way from the village and everywhere I went was in doing that. I was volunteering as a kid in clinics and visiting with the sick in their homes.

It’s a dream I had at a very early age.

Q: Did you want to be a doctor?
A: Yeah, yeah, when I was growing up I thought if I could treat people, that would be great. But one thing I really wanted — my Uncle keeps telling me — you say things as a kid that you don’t remember — but my Uncle keeps telling me, you really wanted an ambulance and a hospital.

A place to prevent what I saw in my family. A place to give kids their parents. Being an orphan at that time — I don’t consider myself an orphan now because I’m a grown up — but being what I was, being left to just figure out where life takes you. I want to give kids their parents and to give kids their lives.

It could be translated as avenging my parents.

Q: So no one in your village of Muhuru Bay had any medical training?
A: At the time, when we were growing up, there was no care. There was no care. It was, like many rural villages, and many rural communities…. The suffering that people go through in those communities and places like where I grew up — healthcare is not there. My goal, my dream, is to keep planting them and plant them with a really strong system and inspire people and get people engaged and create a place that people can go.

Q: So how many clinics have you opened now?
A: I have two clinics. The main one in Muhuru. And I have three out post clinics on Lake Victoria islands. And then I’m just finishing up working on a business plan to scale it up and become a voice, become a stakeholder in healthcare in Kenya and the region.

Q: So you’re doing this from Seattle?
A: I’m doing this both from Seattle and Nairobi. My offices are in Nairobi, Kenya and I have a small office in Seattle. As the work continues I travel to Kenya most of the time.

Q: How much of the year are you in Kenya?
A: I would say maybe five months.

Q: So what do you do when you’re in Seattle?
A: I attend talks, I fundraise, my wife and son live in Seattle. We live in Seattle. My family is here — it’s home. I work, I engage people, I connect with people.

Q: So what changed you from wanting to be a doctor?
A: I started the clinic when I was in college. It took most of my time. It was like, ‘Let me learn how to manage it.’ I thought I would go to grad school and do healthcare management. When I started that, my country, Kenya, went into trouble.

My country went into flames. And I could see that the banks across the country would open. There could be riots, and then five minutes later the banks open. But the first things to close were the healthcare centers and healthcare facilities. It was such a time of need. The first place to close was clinics and hospitals.

I just felt like, ‘Oh wow. There’s work to do here.’ I didn’t close. I just want to give it my time and figure out how I can create something to withstand the challenges and the hard times.

So then I decided to give it my lifetime and dedicate all my time to it.

Q: You were a college student when you opened Mama Maria — how did you do it while you were in school?
A: I fundraised. I talked with people. I told people what we needed to do. And people gave me money and I used the money to start a facility in 2005. And I just kept building on it.

Q: Why did you name it Mama Maria?
A: I needed a name that was very easy in Africa and could be planted anywhere in the world. And I wanted to give something that sounded very welcoming and maternal. I know that’s confusing because it sounds religious — which I’m not. I’m very secular, and my clinics are not based on any religion. But it’s a name that is very easy for anybody.

Q: Gotcha. What’s next for you and the clinics?
A: A robust healthcare system in Kenya. I’m finishing up a business plan with a very, very talented consultancy team. We are finishing a plan to roll out a system that will impact the entire country with primary health care — accessible, primary health care.

That’s what I’m working on. And providing opportunities for people in Kenya to get jobs through healthcare.

Q: How many people do you treat each year?
A: In a year, 14,000.

Q: How many people have you treated total?
A: We’ve treated over 50,000.

Q: I read that you’re recognized on the streets in Nairobi and people call you Daktori? Is that true?
A: You read a lot. People are excited. It’s so exciting.

It’s exciting for the country to see somebody doing what I’m trying to do. Whenever I’m there, when I have the time, the radio stations and the national TV stations want to interview me. Then people see and they get excited.

When I’m in Nairobi, people honk. And they say, ‘Are you Daktori Peter?’ Daktori is doctor. ‘Are you Dr. Peter?’ I say, ‘No. I’m just somebody doing stuff.’ A lot of people know my name but they haven’t met me, but when they see my face, they recognize my face.

Q: Why is your work so exciting for the people?

A: Just the need. People are so hopeless. The different challenges there. The lack of healthcare and the existence of buildings with no medicine. To find someone who wants to tackle that and have medicine…

People in Kenya don’t do that. People do stuff for their tribes.

The only thing I can do is to look at my tribe where I was born and stop there. But to get somebody who has an idea of Kenya and planting clinics in the country — it’s exciting. That part of it is very exciting. That’s what excites people. And then to know that there’s somebody who cares for the sick across the country — when nobody does that — is just really exciting.

Q: What are you mostly treating at your clinics?
A: I was actually working on that, here. We are treating a lot of malaria, and amoebas, and a lot of dysentery. I’m seeing about 40 different diseases that a doctor wrote out for me.

Now, I’m treating HIV. I didn’t treat HIV for a while, but now the government accredited the facility to treat HIV and TB. And the complications that come with that like herpes zoster. We also do maternity and delivery and perinatal care.

Those aren’t diseases — but we treat a lot of malaria, dysentery and typhoid.

Q: Wow, typhoid you don’t hear that a lot anymore. What else do you think is important for people to know about your organization?
A: I want people to be inspired by my organization. I want people to realize that these are things that can be done if we just give ourselves to do them. When we do them, the impact is amazing.

We need support. We need money. We need people’s volunteer time. I’m working as hard as possible to make them sustainable. I don’t give anything for free and that’s a challenge. I try to charge to make it as sustainable as possible. That’s one thing people need to know, I’m doing this — but, I’m using the local economy. I’m taking advantage of the economy that goes on in the villages and figuring out how to make people invest in their lives and in their healthcare. Instead of giving anything for free, I charge a small fee to help sustain.

Q: So the clinics aren’t free?
A: Technically. A child pays $3 for the entire treatment — that covers all laboratory work and medicine and consultation. And adults pay $5 for their entire thing.

Q: Well it’s a nominal payment.
A: Yeah. It’s a fee put there to make people invest. I want people to know that I don’t give things for free. It’s helping people that way. I get in trouble when I get free mosquito nets. — I can’t give them for free. I need to charge 50 cents. People say, ‘You can’t charge.’ But that’s how I work.

Q: You want to teach people healthcare is important to invest in?.
A: And when we run out of medicine we have money to buy more. If you give things for free, you can’t even buy more medicine when you run out.

It’s giving people their dignity. And having them invest — and making them proud of who they are.

Q: But still keeping it attainable.
A: Exactly. Nobody is ever turned away if they don’t have the money. They come with their bicycle. If they don’t have any money, they can leave the bike. They go home, and then two days later, when they get a few shillings, they can come back and get their bike.

Nobody is ever turned away. The poorest of the poor get free medicine. The people that don’t have anybody to help them, we take care of them and we sponsor their medication. We give them ambulance transportation to the hospital.

We have two orphans and there’s nobody to take care of them and they have chronic illnesses. It’s our duty to make sure the kids are taken care of.

If you want to help, please visit: www.mamamaria.org.

Round Two in the Fight to Cover Children with Pre-Existing Conditions: Cost.

Santi KM Bhagat, MD, MPH — Fri, 02 Apr 2010 12:07:29 +0000

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.

Disruptive Women Launches First of its 2010 Breakfast Series: This One on Health Reform Of Course

Hygeia — Wed, 31 Mar 2010 01:19:58 +0000

Our sincere thanks to Mary Grealy, Judy Feder, and Stephanie Cohen for their insightful comments at this morning’s breakfast. And a big shout out to Jennifer Berk, Julie Minevich and Jose Guzman, all of whom tweeted, emailed, and contributed to the success of our first breakfast. If you weren’t able to be with us, you’ll want to read the summary post by Disruptive Women’s Wendy Grossman:

Now that Healthcare Reform Legislation has finally passed – what’s going to happen next?

“The law is an outline – now the novel has to be written,” said Stephanie Cohen, Co-founder of Golden & Cohen. “This is changing daily.”

What happened, how it happened, and what will happen now were topics discussed at the first meeting of Disruptive Women’s 2010 breakfast series early this morning. The discussion, entitled: “Health Reform: US Patience (not a typo) Pay the Price,” was sponsored by Amplify Public Affairs’ Disruptive Women in Health Care Blog and its media partner, The Hill.

Mary Grealy, President of the Healthcare Leadership Council said Americans waited and waited for the new legislation (this is where the patience comes in) – like kids waiting for Christmas morning. But now, we have to open the presents and see what’s inside. Did we get what we wanted? Or did we just get socks? “We either had one of the greatest achievements or the downfall of the republic,” she said.

Grealy discussed both the positives and the negatives of the new legislation. Most agree that making health insurance more affordable for millions of uninsured Americans was good. “It really was the right thing to do,” she said.

But, what happens next remains to be seen. What if people wait until they get really sick to get health insurance (since they will no longer be denied coverage). Will that lead to higher rates? “Will Washington say, ‘Hey, we made a mistake and fix it?’” she asked. Or will they go the predictable route and blame the insurance companies?

Will people rather pay a fine, than pay for coverage? Plus, while more Americans will be eligible for Medicaid – they may not be able to get treatment, since many doctors don’t accept it. Just because the legislation passed, doesn’t mean the work is done. “Congress is really going to have to revisit this,” she said.

After Mary spoke, Judy Feder, Professor of public policy and former Dean of the Georgetown Public Policy Institute talked about the history and politics of the new legislation. “I’m beside myself with excitement,” Feder said. “My God, you couldn’t have a more dramatic process – we were up, we were down, we were dead, we were alive…. I am of the camp that calls this a bloody miracle.”

Healthcare reform has been decades in the making, she said. “It goes all the way back to Teddy Roosevelt.” “This was too big to fail.” She spoke about all the roadblocks the bill faced – like losing the 60th vote when Scott Brown (R-Mass.) was elected. “I loved Senator Kennedy – but I am still mad at him,” she said. “He could have held on just a little longer.”

Still, the day of the vote was a “cliff-hanger,” she said – no one knew what would happen. But, “they compromised, rallied the troops, and delivered,” she says. “It shows that Congress can get something done…. If we can pass this legislation – we can do anything.”

Stephanie Cohen, who recited insurance change after insurance change, told the group that the legislation is still a work in progress. “There are a lot of misunderstandings,” Cohen told Disruptive Women. “The book is being written chapter by chapter. It has to be revised. This is just the beginning.”

There isn’t a solid plan for exactly how everything will be implemented. “I learned that a lot of this is still up in the air,” said Cara Tenenbaum, Vice President of Policy and External Affairs for the Ovarian Cancer National Alliance. “I don’t know what to tell patients. I don’t think anyone does.”

Still, the discussion this morning tried to fill in the blanks and explain exactly what happened and what’s next. “It’s important to be able to distill this information, because much of it remains uncertain at this point,” said Santi KM Bhagat, MD, MPH and President of Physician-Parent Caregivers. “We don’t yet understand the full implication of the legislation… I don’t think there was time for transparency, it moved so fast. It helps to be able to discuss it together.”

The next breakfast meeting, “News: (Hot) Flash: Sex, Drugs & Menopause,” will be April 29, 2010 from 7:30 a.m.-9 a.m. If you are interested in attending, please register here: www.disruptivewomen.net/breakfastseries. Men are welcome, encouraged even, to attend. Come on, you know you want to.

Maternal Mortality Crisis in the US: Amnesty International Issues New Report

Ruth Lubic — Thu, 18 Mar 2010 16:08:07 +0000

By Ruth Lubic. The release this week of Amnesty International’s new report, Deadly Delivery: The Maternal Health Care Crisis in the USA, highlights the poor outcomes of African American women in particular.

When I set up The Developing Families Center in Washington DC’s Ward 5, it was with the goal of addressing this very issue, particularly from the point of view of infant mortality.

At a rate of 12.22 per thousand live births, the District has the highest infant mortality of any of the states, with only Mississippi, at 10.74 also experiencing a double digit rate.

The Center has been successful in reducing poor infant outcomes, especially as compared to the District’s African American population as a whole. Our data show the success of our staff of nurse-midwives, who function with the consultation of obstetrical colleagues at Washington Hospital Center, and nurse practitioners in lowering cesarean section and improving infant health. Breast feeding peer counselors, through influencing the Family Health and Birth Center’s (FHBC) high breast feeding rates also add to the health of mother and infant.

Our research also demonstrates the significant savings which have been achieved–all through collaboration with its community and its collaborating partners, the Healthy Babies Project and the United Planning Organization’s Early Childhood Development Services. There has been no incident of maternal mortality.

I hope this paper from Amnesty International will, in the long run, improve not only the infant and maternal outcomes, but also the quality of life of the families we serve.

May I also remind readers of the health needs of men in Ward 5, where the life expectancy for males, recently at 56 years, is lower than in Kenya!

The Urban Institute is currently studying FHBC’s outcomes and I will report on those once they are final.

Balancing Access to Experts and Better Pay for Primary Care

Stephanie Mensh — Tue, 26 Jan 2010 13:00:43 +0000

Every January, new billing rules and rates go into place for physicians’ services as part of the annual update to Medicare’s Physician Fee Schedule. Dominating DC health policy concerns in this arena are the medical community’s efforts with Congress to address Medicare’s cost-of-living adjuster, known as the “sustainable growth rate” (SGR), which would have lowered 2010 fees across-the-board by 21 percent, if not for a last-minute temporary stay through the end of February. Negotiations with Congress are on-going to provide a long term or multi-year solution—a costly “fix” that I believe is well worth the price to keep physicians in the Medicare program, and seems to have widespread support.

Getting much less attention is a unilateral policy pronouncement made by the Centers for Medicare and Medicaid (CMS) that Medicare will no longer pay specialists a higher rate for consultations—services often provided by specialists like cardiologists and neurologists. Instead, all physician visit services, whether defined as “evaluation and management” (E&M) services or consultations, will be reimbursed at the same E&M rates.

CMS explained that this new policy would equalize reimbursement among primary care and specialists. Medicare Fee Schedule rates are based on “relative value units” (RVUs) for each CPT (billing) code, with higher RVUs for consulting codes. By eliminating payment for specific consultation codes, CMS was able to reallocate those RVUs into the E&M rates used by all physicians, and so raise those rates. This action was part of CMS’s determination to attract and retain primary care physicians to serve Medicare beneficiaries.

Given the typical 30 to 60 day lag in billing and reimbursement, specialists will not feel these new Medicare reductions in their consulting fees for a few weeks or more. Also, it is too soon to tell if the increases in the E&M rates will be seen as a sufficient reward for primary care.

I agree that we need more primary care physicians in our health care system to help guide all of us along a pathway of good health and wellness, as well as to treat Medicare patients and other more complicated patients, like those with chronic conditions and/or disabilities. But these generalists also need to have a reliable referral base of specialists who can diagnose, treat, and advise on managing particular concerns. We need all of these physicians and more, so I hope we can find a fair balance between them.

Source: Final Physician Fee Schedule Rules (PDF), p. 33 (via the CMS website)

Health Reform: The Pursuit of Progress

Tine Hansen-Turton, MGA, JD — Fri, 15 Jan 2010 11:22:10 +0000

Healthcare (insurance) reform has passed in the Senate and final negotiations are happening before it moves on to the President’s desk for signature. While the legislation is not perfect – in fact some would say far from perfect – it is a piece of legislation that is very much in keeping with our American philosophy, our constant pursuit of progress and change.

As the late Senator Kennedy’s career on Capitol Hill demonstrated, change is usually incremental, usually negotiated and usually compromised. But at the end of the day, change usually amounts to progress.

I see tremendous progress, too, as I look back on a decade’s worth of work to promote access to affordable quality health care using nurse practitioners in the role as primary care providers, thereby alleviating the burden on a strained primary care system.

We’ve come a long way regionally and nationally. The fact that we as a country are always striving to improve our path is what most invigorates me as a relatively new American. Our pursuit of progress is never ending, but it is what sets us apart from most countries in the world. We know our work is never done. As we enter a new year and decade, we always should remember that what makes us different from most people and countries in the world is that we have the freedom to purse progress and make change.

This health insurance reform bill is not the end all or be all, but it will help make affordable health insurance available to more than 30 million Americans who have been without it. Furthermore, the legislation contains many provisions for others who fall through the cracks and will need additional care and support.

That’s progress for individuals, families and America, as Walt Disney would have said. And not until you take a ride on the Magic Kingdom’s The Wheel of Progress will you truly appreciate how important it can be to take even a small step in the right direction.

Happy New Year! And a toast to a New Decade and our new Pursuits of Progress for individuals, families, and our country.

If he could speak, what would he tell our leaders? Tell them for him.

Lois Privor-Dumm — Mon, 11 Jan 2010 16:28:22 +0000

As we all know, children can’t speak for themselves, but if they could, they’d probably point out the obvious: they need more attention. There have been some great strides over the years and some compelling examples such as those shown in Bill and Melinda Gates’ Living Proof project and the Measles Initiative. In the recent installment of Raj Shah, the new USAID Administrator, he touts the progress that his new agency has already made in preventing unnecessary deaths. He is pragmatic and encouraging as he also says that much more should be done. To save more lives, we need to make sure the US investments are there. Look at the numbers: More is needed to ensure two leading childhood killers are addressed. More global funding is needed for new vaccines such as pneumococcal and rotavirus vaccines offered through the GAVI Alliance to prevent much of the disease in these at risk children. Vaccines can’t do the whole job, so inexpensive treatments such as antibiotics or oral rehydration therapy are also needed along with training of health workers to prescribe or education of parents to seek care – certainly not impossible, but requiring some effort and focus.

Sources: US Global Health and Child Survival Budget, 2009 and UNICEF, State of the World’s Children, 2008

Now is the time to speak up and insure that the right investments will be made. Please Call to USAID to take action on pneumonia and diarrhea. You can submit a letter to Dr. Shah both welcoming him and asking for him to speak up for children. Visit: http://www.change.org/actions/view/call_to_usaid_to_take_action_on_pneumonia_and_diarrhea.

You Gotta Laugh: Life in the Trenches of the Health Insurance Business

Stephanie Cohen — Tue, 29 Dec 2009 15:33:12 +0000

Think you have maternity coverage? Think again.

Welcome to the first entry of the book I’ll be publishing in 2010 entitled: You gotta laugh: Life in the trenches of the health insurance business. Because I think Disruptive Women readers will find it useful, each month I’ll post an example of a health insurance problem that is so maddening and frustrating that we just gotta laugh at its absurdity.

My goal, however, is to find a way to improve health insurance for beneficiaries and I have some suggestions at the end of this post.

This month’s question: What do you do when you have it in writing from your insurance company that you have maternity coverage — but when you go to use the benefit, the customer service department tells you otherwise?

The situation: When our client, Ms. R, found out a few years ago that she was having a baby she was thrilled. Immediately, she called the insurance company to confirm her pregnancy benefits. Making the call was merely a formality. When she originally purchased the policy, she was single and didn’t opt for the maternity rider. After she got married, she added maternity coverage because she wanted a family.

Indeed, when she called the insurance company, they confirmed she had the insurance she needed. However, after her first OB check-up she received a letter saying she was, in fact, not covered.

Panic ensued, followed by a slightly hysterical call to my office. We quickly phoned the carrier, and unfortunately it took two weeks of repeated calls to get the information we needed. Finally, we received an email from a reliable supervisor confirming that the rider had been added and she was covered.

Three years later, Ms. R became pregnant again. Following proper protocol, she again called the insurance company to notify them of her second pregnancy. She was told she had no coverage. Surely this was a mistake. She hung up, composed herself, and called back.

This time another agent told her she had dropped her maternity coverage the day her first child was born. Frustrated and confused, Ms. R called me. Who would drop their coverage while giving birth? The only person who can drop coverage is the one who is insured. I don’t know about you, but I was not calling the insurance company during my 27 hours of labor.

Ms. R saved an email from the insurance company stating that she had coverage prior to getting pregnant the second time. Although the letter clearly stated that she had maternity coverage, it took three people making nine calls for four weeks to get a definitive answer — that Ms. R did in fact have coverage and the policy would pay for her delivery.

What we never did discover was why the coverage was dropped in the first place. Who authorized the change? And why did it take so long to resolve the matter? You gotta laugh.

Here’s how you can take control

What can you do to make sure a situation like this doesn’t happen to you?

When you are thinking about getting pregnant, call your broker or insurance carrier to confirm that you are covered.
Make sure to get the name and telephone number of the person you spoke with, the department and supervisor’s name and telephone number, and the reference number for the call.
Always write down the date and time that you placed the call.
When buying a policy, if you are of childbearing age, be certain that you are covered for maternity.
Get a copy of your contract and review it carefully to be sure you are covered for all future potential situations.

If I were the health insurance ambassador

If I were in charge of health insurance policy, I’d make sure that every carrier clearly outlined and explained what is covered in the policy. When amendments are made, policies should be updated, customers notified, and changes posted on the insurance company’s website using easy-to-understand language.

Too often, this information is buried in the policy and is difficult — if not impossible — for consumers to understand. I’d also make sure that carriers were required to respond to issues like Ms. R’s within 48 hours.