Patient Navigator

Patient and Medical Advocates to Guide Your Journey Through Illness

While many of the Patient Protection and Affordable Care Act of 2010 provisions have been implemented, there are some notable changes in 2013 that may affect you.  This year will be busy with States preparing to launch in 2014 either their own or a Federal health insurance exchange.

According to a useful Guide from Consumer Reports, here’s what to expect this year.

Standard disclosure forms. Beginning in September 2012, all health plans had to use a standardized, consumer-friendly form to provide a uniform summary of benefits and coverage, including information on co-payments, deductibles, and out-of-pocket limits. This will make it easier for you to compare plans.  Insurers will also have to calculate and disclose a patient’s typical out-of-pocket costs for two medical scenarios: having a baby and treating type 2 diabetes. See a sample form (PDF).

Caps on Flexible Spending Accounts (FSAs). Employers could still set their own limits (usually $2,500 to $5,000) on FSAs in 2012. But in 2013, the most you can set aside tax-free for medical expenses not covered by insurance will be $2,500, with the cap increasing by the annual inflation rate in subsequent years.  Plus you can no longer use FSAs to pay for over-the-counter drugs unless you have a doctor’s prescription. The cap takes effect January 1, 2013. For people with 2012-2013 health care plans that run on a fiscal (rather than calendar) year, the cap kicks in July 1, 2013. Read more about FSAs.

New Medicare tax for high earners. Two Medicare-related taxes will impact high earners in 2013. Individuals earning over $200,000 (or $250,000 for couples who file jointly) will see their Medicare payroll tax rate increase from 1.45 percent to 2.35 percent. They’ll also pay a new 3.8 percent Medicare tax on unearned income, including investments, interest, dividends, annuities, rent, royalties, certain capital gains and inactive businesses.  Read more about Medicare.

According to the Kaiser Family Foundation, other changes in this timeline include:

Phasing-in federal subsidies for brand-name prescriptions filled in the Medicare Part D coverage gap (reducing coinsurance from 100% in 2010 to 25% in 2020, in addition to the 50% manufacturer brand-name discount).

Establishing a national Medicare pilot program to develop and evaluate making bundled payments. The law establishes a national pilot program to encourage hospitals, doctors, and other providers to work together to improve the coordination and quality of patient care.  Under payment “bundling,” hospitals, doctors, and providers are paid a flat rate for an episode of care rather than the current fragmented system where each service or test or bundles of items or services are billed separately to Medicare.

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.

 

We hear so much news about cancer research, drugs and treatments that it is easy to feel overwhelmed and confused. Fortunately, The American Society of Clinical Oncology (ASCO) publishes a yearly report which brings together all of this information in a useable, consumer-friendly way. 

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.

A meta-analysis published in the September 10, 2012 online edition of the Archives of Internal Medicine has concluded that, “Acupuncture is effective for the treatment of chronic pain and is therefore a reasonable referral option.”

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.

When my wife Heather was diagnosed with mesothelioma, I wasn’t sure how to react, and now when she asks about what I went through, I can only think of it as an emotional learning experience. With this, I hope to explain more about my role as a caregiver and the way our family pulled through such a rough time.

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.

Submitted by guest editor Cameron Von St. James

Medicare’s 2012 Open Enrollment Period will run from October 15 through December 7.  During this period, people with Medicare can change their Medicare health and prescription drug plan coverage options.  Changes that are made on or before December 7 will take effect on January 1, 2012.

If you are happy with your Medicare plan, there is no need to take action. The official Medicare site has done a great job explaining the basics in a user-friendly way.

However, we encourage patients to pay attention and to understand their coverage, particularly in light of changes that may be coming as a result of Federal budget negotiations.  This is also a good time to review your Part D Prescription Drug Plan coverage.  If your medications have changed, it may be worth your while to do some research. 

The official Medicare site has a new design that makes it faster and easier to answer Medicare questions. You can set up your own account to track claims, providers, and manage your health and medications. The site offers tools to compare nursing homes and Medicare plans
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Another useful resource is The Medicare Rights Center website which has useful interactive tools and can help you with Part D questions and Medicare FAQs. The Center offers several useful newsletters that can help you stay informed. 

A word of caution:  Private Medicare Advantage Plans (Part C) can start marketing to you as of October 1. These are private HMO insurance plans that contract to Medicare to provide your services; they are not traditional Medicare. Before you make any decisions or changes to your Medicare, do your research. Don’t let a fancy marketing brochure fool you.

 

I have been reading “The Hippocratic Myth” by M. Gregg Bloche  MD.   As a good book always does, it has given me a great deal to ponder at odd moments during the day.

While reading, I found myself engaged in internal debate regarding the obligations inherent in the doctor/patient relationship.  Is the nature of this important relationship one between equals, between a superior and inferior?  A relationship of trust, one of dependency, or simply a contract between a consumer and the person hired to perform a service?

The fact that the answers to the question are “all, some and none of the above,” depending on the situation, makes defining the roles of doctor and patient very difficult.  However, in all cases, physicians and patients owe each other certain basic obligations.  My own personal list of these duties is as follows:

Doctors owe Patients

  • Respect as a fellow human.  A patient is not “the cardiac case in Room 3”.  The doctor is not omniscient or omnipotent and should never act as if she is.
  • Respect for their time. Doctors have limited time to treat patients; people do understand this and are usually willing to wait a reasonable amount of time.  However, after an hour and a half in the waiting room with no explanation, a patient is clearly not being respected.
  • Read the chart before entering the room. This simple act can prevent many misunderstandings and clinical confusions.
  • Keep the patient’s information private and confidential.
  • Provide evidence-based care. Doctors owe it to their patients to stay current on research and clinical trial results in order to provide the best care available, even when the new evidence contradicts what the doctor learned in medical school.
  • Respect informed decision-making. The doctor can and should provide his absolute best medical opinion.  However, the patient is the ultimate decision-maker and all physicians should support the goal of having well-informed patients making the best decisions for themselves.

Patients owe Doctors

  • Honesty. Doctors cannot provide effective care if a patient fails to disclose aspects relevant to their condition and treatment options
  • Respect for their time. This one works both ways.  A respectful patient will be prepared for his appointment and have a concise list of questions or issues to discuss, not spend precious minutes trying to remember something he thought about the night before.
  • Prompt payment.  Increasingly, doctors are getting squeezed between patients’ own economic challenges, the insurance companies’ failure to provide coverage due to some glitch or technicality.  Physicians are carrying this financial burden, sometimes for a year or more.
  • Adherence to prescribed treatment. The patient has an obligation to adhere to a treatment as it is prescribed by the doctor, provided that the treatment is not making things worse, and that the prescribing physician is available for communication regarding the results and possible side effects of the treatment, and open to adjusting the treatment if the patient is not responding well.

By recognizing and being mindful of these obligations and responsibilities to each other, the physician/patient relationship would proceed more smoothly and easily that we often encounter.

Guest Editor:  Debora Harvey, Patient Navigator LLC

If you are currently expecting a child or are planning to in the future, you have the opportunity to preserve a potential lifesaver for not only the child to be born, but also your other kids and maybe even their mother. And it’s normally discarded in the trash. What is it? Blood from your baby’s umbilical cord, when properly collected and preserved immediately after delivery,  contains viable stem cells that can later transform into a variety of different cell types. Transplanted into a sibling, mother, or the baby years later, the stem cells can be a treatment for a variety of diseases, including various cancers, bone marrow failures, blood and metabolic disorders, and immunodeficiencies. It is also being tested in treatments for diabetes, cerebral palsy, and brain injury.

After collection at birth, cord blood (CB) is shipped to a CB bank where it is processed, which usually costs $1500-$2500. Thereafter, storage fees are approximately $150 annually, a cost sometimes guaranteed not to rise for 20-25 years. These expenses are typically not covered by insurance, unless someone currently covered by your policy (like another child) has an anticipated need for CB because they have been diagnosed with an illness treatable with CB.

You might also be able to donate the CB to a public bank, available for others to use, at no cost in certain hospitals. If your hospital does not participate, you may still be able to donate by contacting one of the public banks directly.

Unfortunately, CB is not a panacea. A baby’s own CB cannot be used to treat certain cancers because it usually contains the same genetic predisposition that caused the cancer. And the odds that you will ever utilize the CB are remote: the most commonly quoted odds are 1 in 2,700, or 0.04%, and some calculate the odds as much less. To put that in perspective, that’s about double the chance you might be killed in a car accident in any given year. But you can cut your risk of being killed by half, back down to the odds you’d use CB, by simply using a seatbelt, and you don’t think twice about driving your car. And the chances of winning the lottery? 1 in 15 million, or 0.000007%. Yet some of us still think we can beat those odds, at least occasionally.

Many professional organizations advocate donating CB to public banks for use by the public at large, much like blood banks. But due to the expense and the odds you could ever utilize privately banked CB, many of these same organizations, including the American Medical Association, the American Academy of Pediatrics, American Congress of Obstetricians and Gynecologists, and perhaps most importantly, the American Society for Blood and Marrow Transplantation (who members are physicians who would likely actually treat someone with CB) still do not recommend retrieving CB unless a family member has a disease that can be potentially treated with it.

So what should you do? Electing to privately store CB is much like buying an insurance policy. If you ever need it, you’ll be glad you did. If your child is that 1 in 2,700, it doesn’t matter what the odds are. You just have to decide if a few grand is worth that peace of mind.

Guest Editor:  Dave Schlosser, Patient Navigator LLC

One of the best cancer websites is managed by the American Society of Clinical Oncology (ASCO).  It contains incredibly useful information on everything a cancer patient needs to know, from cancer education, management, financial help, treatments and survivorship.

Each year, the American Society of Clinical Oncology conducts an independent review of advances in cancer research that have the greatest potential impact on patients’ lives. This year, Clinical Cancer Advances 2011 features 54 significant studies, including 12 that the report’s editors consider major advances.

This year’s Clinical Cancer Advances report also recaps the year’s most important cancer policy developments and ASCO policy initiatives that are likely to influence cancer care over the coming years. These include developments that could help to accelerate the pace of clinical cancer research progress and ensure access to quality cancer care for patients.

Anyone who is impacted by or interested in cancer research, treatments and care should look at this report.

This article and more can be read on the Patient Navigator December 2011 newsletter.

Submitted by guest editor Debora Harvey, Patient Navigator LLC

I went to pick up my hearing aids yesterday.  These are fairly new, only a few months old, yet I have had to send them back to the manufacturer twice so far, and I am not confident that they will work well even now.  The irony is that I paid $3,000 out of pocket for these assistance devices.  They are not covered by my health insurance.  I do have a “discount program” that enables me to go to a provider that has an agreement with my insurance provider, who supposedly charges me less than the current market rate for these devices.  Unfortunately, I am much less than satisfied by both the quality of the hearing aids, and the competence of the “audiological specialist” to whom my insurance company has steered me.

I was in my twenties when diagnosed with a hearing loss significant enough to need amplification. I resisted the need for hearing aids, but the doctor explained to me that, unless I could get the sounds to my brain, my brain would slowly lose the ability to recognize sounds and speech.  Even if my hearing were miraculously restored, I would be unable to understand the words people spoke.

According to the American Speech Language Hearing Association, hearing loss is the number one birth defect in the United States.  Twenty percent of children have some sort of hearing or speech disorder.  Half of the 28 million Americans with a hearing disability are under the age of 50.

Among other statistics, the National Institute on Deafness and Other Communication Disorders (NIDCD) reports that:

  • Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
  • There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing impairment.
  • About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.

Yet many insurance companies significant limit coverage of audiological services, if indeed they cover them at all.   Medicare, the primary insurance for millions of older Americans, does not cover hearing aids or eyeglasses, basic needs for people who are losing the acuity of sight and hearing as they get older.

It is a matter of economics.  In order to keep private or group premiums affordable for individuals or employers, these type of assistance devices are excluded from coverage.  If Medicare were to include this coverage, its budget would be hundreds of millions of dollars more every year; dollars found in tax increases.

ASHA has an active advocacy program working to improve disability benefits in general, especially those relating to hearing disabilities.   Take a look if you or someone you know needs help.

To learn more about hearing loss and other communication disorders, visit the NIDCD Health Information site.

I received the news last week – two more friends have been diagnosed with breast cancer.   I cried.  This is the fourth friend in less than two years that has been diagnosed with cancer – a diagnosis that is frightening, life-altering and potentially life-ending.

This isn’t fair.  Why is this happening?

These are all women in their 30′s and 40′s.  None of them scores high on the list of risk factors.  My friend Nadine eats very well – almost no refined sugar, lots of vegetables and healthy complex carbs, proteins.  She breastfed her children for years.  She exercises every day.   She even rode her bicycle to and from chemotherapy appointments – a huge inspiration to everyone!  Elaine, who has just received her diagnosis, is the mother of a still-nursing infant.  Her whole family eats organic meats and produce, locally grown as much as possible.  She is not obese.  They exercise and try to minimize the toxins in their environment.

With so many of the risk factors removed, why are they still getting cancer?

It makes me so very angry that the only answer is “we don’t know.”  Sometimes lightning just strikes and we don’t know why.

To each of my friends, I have reached out to offer what help I can.  I have given them a copy of Patient Navigator’s “Cancer Diagnosis – 10 Things You Need to Know.” I have offered to help with their family responsibilities, research treatments and go to appointments with them.  I offer food and support.

It doesn’t feel like it is enough.  Especially when they look at me and ask ‘Why?”

Guest editor:  Debora Harvey, Patient Navigator LLC