Testicular Cancer Awareness

As we close out Testicular Cancer Awareness Month, our partners at the Testicular Cancer Foundation share valuable information about testicular cancer awareness, prevention and detection.

Did you know that testicular cancer is the most commonly diagnosed cancer for men that fall between the ages of 15 and 34? Affecting those early in their lives, it’s important to detect signs of testicular cancer as soon as possible, starting the journey to survivorship. April is Testicular Cancer Awareness Month, and in an effort to help spread the word about steps to finding, diagnosing, treating and coping with this life-altering circumstance, Tommy John is partnering with the Testicular Cancer Foundation (TCF) to continue and strengthen our support of men.

Testicular cancer is the growth of malignant cells in one or both of the testicles. This directly impacts the male reproductive system and can alter lives in many ways, just as with any cancer diagnosis. Early detection is key, and it starts by being informed. Approximately one male is diagnosed with this cancer every hour, and on average, one male dies each day from this disease. However, it’s important to note that testicular cancer is one of the most beatable cancers when identified early. That being said, let’s take a look at methods for performing a quick self-check, as a proactive step before seeing a doctor or urologist. As always, be sure to consult a doctor for a proper diagnosis.

Testicular Cancer Awareness

 

Self-checks are an important step to taking control of your health and staying proactive when it comes to a potential cancer diagnosis. If diagnosed, one’s life can be understandably turned upside down. A common stigma that men often face, is that testicular cancer can negatively impact their manhood. This mindset can make it difficult to ask for professional help. However, with proper treatment, one can quickly work towards a healthy recovery. As TCF confirms, “The good news is that after surgery, and the potential treatment, the majority of men return back to a normal healthy life including, recreation/hobbies, work, sex, and family life.”

If diagnosed, what comes next? Cancer affects an individual on both a mental and physical level. Survivor Scott Lazerson urges, “My #1 recommendation for anyone facing cancer is positivity. Being positive is the biggest game-changer of life.” A healthy mindset can make a huge impact when embarking on a path to full recovery. What about the physical impact? The infected testicle, and in some cases other infected areas, are removed and sent for testing to determine that stage and nature of the cancer. This will help doctors to identify the best mode of treatment, whether this be surgery, post-op chemotherapy or further testing to determine the return of malignant cells. TCF has supplied many post-op TC patients with our Tommy John underwear in an effort to encourage a comfortable recovery. Research has also shown that proper-fitting underclothes can provide several other health benefits. Check out TJ underwear here, as well as our design dedicated to TCF. A portion of these purchases go towards the treatment, research and care associated with testicular cancer. Explore our #KnowYourBalls campaign for more information.

One of the most important points to keep in mind is that there is hope. Again, diagnosis and the most-effective path to recovery will be different for every individual and can only be determined under the care of a doctor. In the meantime, TCF educates men and offers support for early detection and prevention, noting that, “living a healthy lifestyle is a huge proponent to reducing your risk for all types of disease including testicular cancer. Being an advocate for your own health and knowing your body is extremely important.” There are many resources available to stay educated on this cancer, as well as support for those diagnosed and recovered. Take action today to ensure your personal health as well as the health of the men in our lives.

Sexual Health and Pleasure With Cancer in Your Life

By Barbara Musser of SexyAfterCancer.com

We all understand the need for physical health and how precious that can be when we Sexual Healthare on the cancer journey. Serious or chronic health issues like cancer change our lives and we have the opportunity to take responsibility for our health and wellbeing in all areas in new ways. We learn when to get help, what kind of help we need and how to create plans for health management.

Physical health includes sexual health. For many people it’s embarrassing to even have sexuality and know that we are sexual beings ~ just look at the design of our bodies to know that we are designed for sexual function and reproduction. We can take this for granted, and then it all changes with cancer treatments. We aren’t asked about our sexual health, we don’t know how to talk about it, and we don’t always know what sexual health really is. Doctors are trained to look for pathology instead of wellness, and to treat pathology. It’s easy to end up ignoring our sexuality ~ the old “out of sight, out of mind” approach. Or we can get superstitious about it, thinking things like, “What’s meant to be, will be.”

When our genitals and sexuality are altered by cancer and treatments, it’s easy to think we’re not meant to have a healthy sex life.  We may not even know what a healthy sex life is. Stop for a moment and think what you were taught about sex when you first learned. Who told you about sex? What did they say? Chances are is what all about pregnancy and disease prevention, not about pleasure. There may even have been some shaming. Most of us didn’t learn a lot about the joys of sex and how to be creative in our pleasure.

When cancer comes into the picture things often don’t work in the same ways in our bodies and genitals. The traditional ideas that sex involves penetration and intercourse can now be painful and we avoid it. After all, who wants to do something that’s painful? What can we do?

This is an opportunity to define intimacy and sexuality for ourselves and discover our capacity for sexual health. To begin, get to know what your capacity is by exploring what feels good to you now. What kind of touch and where, how much or how little pressure? Where do you feel numb or pain? Does massage feel good? Gentle stroking with fingernails or a feather? Stretching and gentle pulling? Kissing? Where? What kinds of lubricants do you like?  Is intercourse painful? Do you use any sex toys? If so, what do you use and how? What would you like to explore and learn about? Is it easy for you to talk about these matters with your partner?

Whatever state you are in with these questions and your sexuality, you can always radiate erotic energy simply by thinking about it.  This doesn’t have to be anything overtly sexual; rather, it’s a state of mind, something that is internal to you. We can tap into deep sexual energy with a partner without getting physical. You can affirm sexual health regardless of external circumstances.

Join me on April 19 for a FREE webinar all about this: “You and Your Body – Cancer, Intimacy and Sexuality.” We’ll talk about what happens in the body, how arousal happens (or doesn’t) and some ways to begin to feel pleasure again. There will be plenty of time for questions and it will be a lively conversation. Register today!

Living Paycheck to Paycheck and then . . . Cancer!

Paycheck to PaycheckAt the beginning of 2016, headlines all over the country read something like “63% Of Americans Don’t Have Enough Savings to Cover A $500 Emergency.”  This alarming statistic was according to a 2015 study by Bankrate.com.  What it really meant is that nearly two-thirds of us are living paycheck to paycheck.  What does a $500 emergency look like– your car needs new breaks, your dog has to go to the vet, or your refrigerator breaks down. These are not uncommon expenses, and they shouldn’t be unexpected expenses.  Nevertheless, 63% of us are not ready to face these everyday emergencies.

What happens when someone in that 63% of Americans is diagnosed with cancer? It can lead to a financial catastrophe. Thanks to the Affordable Care Act (ACA), more Americans have health insurance than ever. But for many people, including those with health insurance coverage through their employers, that insurance doesn’t kick in until they meet their high deductible. If they don’t have $500 in savings, they certainly don’t have the money for their deductible, which often ranges from $1,000 – $10,000. For those without health insurance, they have to pay the entire cost of their cancer treatment. For those with insurance, patients often report being left with out-of-pocket costs ranging from $25,000 to $40,000, beyond what their insurance covered.

Cancer is expensive.  Patients face a myriad of expensive diagnostic tests and therapies including CT scans, MRIs, surgery, chemotherapy and/or radiation, hospital stays, anesthesiologist fees, on-going multiple doctor visits, lab testing, and more. According to the Kaiser Family Foundation, the cost of chemotherapy is going up 10% per year!  And all of this doesn’t take into account lost wages, travel expenses, child care expenses, and other unexpected expenses that may come along with a cancer diagnosis.

If you find yourself or a loved one in this situation, there is help.  Triage Cancer has many financial tools and resources available to you:

Talk with your health care team, as they may know of local resources, as well. The key is not to assume that you don’t qualify. If you don’t ask, you will never know. Remember, you aren’t the only one possibly living paycheck to paycheck.

Unexpected Costs of a Funeral

Too many people are caught off guard by the cost of a funeral. In general, funeral costs Unexpected Costs of a Funeral are not something you think about until you are at a very vulnerable point in your life. You are grieving the loss of a loved one and at the same time, being forced to make very expensive funeral decisions. Our hope is to provide you with a valuable perspective of the hard costs involved in a funeral and provide resources to help you start to plan for some of those expenses.

There are three main cost categories in funeral planning: costs related to the funeral home, the cemetery, and the grave marker. These costs can easily range from $3,000 to $15,000.  We know that these costs can vary greatly depending on where you live and what you choose, but here is a list of the most common expenses:

Funeral Home

  • Funeral director’s basic services fee
  • Embalming and body preparation
  • Casket
  • Funeral ceremony and viewing
  • Miscellaneous (e.g., hearse, death certificates, obituary, memorial services, flowers, music, prayer cards, motorcycle officers to escort a funeral procession between a memorial and burial site, and other custom features)

Cemetery

  • Grave site (plot)
  • Open/Close Fee (digging and placing the casket in the grave)
  • Fee to place the grave marker (also called a head stone)

Note: most cemeteries have rules about the type of headstones allowed, including the size and features.

Grave Marker

  • Headstone

Note: the price of a headstone is generally calculated by weight, so the larger the headstone, the more expense it will be. If you want custom features such as an engraved photo or image, that will cost more.  If you are not purchasing the headstone from a cemetery, but from another retailer, you may also have to pay to ship the headstone.

The good news is that if you are prepared for these costs, you can reduce them and find strategic ways to pay for them. For instance, you can compare prices of funeral homes. Funeral homes are businesses and just as you would compare prices on anything else, you can compare funeral home costs. Also, though the funeral home may not have it on display, they must offer a simple pine casket. You can even buy your casket at Costco. A funeral home cannot require you to buy a casket from them. In addition, no state requires embalming if certain time constraints are met.

Depending on your preferences, you could also consider cremation. By 2025, it is expected that 56% of people will choose cremation. Cremation can be less expensive, averaging around $3,200 plus the cost of a $20 urn that you can buy online.

Some funeral homes and cemeteries will not accept credit cards or payment plans, but require payment in cash and up front. Some funeral homes and cemeteries will allow you to set up a payment plan, if you pre-plan a funeral. You can also consider purchasing funeral or “final expense” insurance, to cover the cost of expenses.

Don’t let funeral costs catch you off guard.  Thinking through these options and your preferences can help you be prepared and avoid overpaying for a funeral.

For information about pre-planning:

http://www.nfda.org/consumer-resources/planning-a-funeral

https://www.funerals.org/consumers/

For more general information about estate planning.

Comfort Kits from GivingComfort.org

The cancer community is full of supportive resources.  Today we’d like to shine a light triage-cancer-blog-comfort-kitson a resource from the McKesson Foundation: Giving Comfort.  Giving Comfort is a program that puts together and delivers comfort kits to patients suffering from cancer.  Working with hospitals, care facilities and service organizations that support cancer patients, Giving Comfort gets these kits to someone who needs it, right when they need it the most.

The kits are customized by age group and gender and are full of things that are both helpful and comforting.  For example, a young girl would receive a kit with fuzzy socks, a soft blanket, a hope chest full of affirmation cards, a stuffed animal, a soft pillow case, a sleep cap and games.  A teen girl would get most of the same things, but with different games.  Giving Comfort came up with the packing lists after surveying over 1,000 patients, nurses and other oncology professionals.

Kits are assembled by a group of volunteers and they are distributed by a network of community partners.  Community Partners include the American Cancer Society Hope Lodges and the Ronald McDonald House.   Kits are provided to the community partners at no cost and are then given to patients at no cost.

To find out more about this thoughtful and generous program, visit http://www.givingcomfort.org.

“You have cancer.” Now what?

by Aditi Narayan, MSW; LIVESTRONG Program Manager

When Ana heard the words “you have cancer” at the age of 23, she was in shock.  She told her parents right away. Her mother wanted to know whether she could still have children after treatment for cervical cancer.  Her father wanted her to get a second opinion.  Her friends wanted to know how they could support her.  Ana wanted to know whether she would live and how much having cancer would cost – financially, physically, and emotionally.

Her doctor told her about the side effects of the recommended treatments, but Ana left the appointment with more questions than answers about the myriad ways cancer would affect her for the rest of her life.

Do I have to tell my coworkers? How much time will I have to take off of work? Can I drive myself to chemotherapy or will someone else have to take me? How much will this cost? Can I afford this?

Unfortunately, Ana’s story is all too common among the more than 15.5 million people affected by cancer in the United States. While your health care team focuses on your medical needs, LIVESTRONG focuses on you, not the disease. Our free, personalized and confidential one-on-one navigation services can help with financial or insurance counseling, education on diagnosis and treatment options, access to discounted fertility preservation services, emotional support, clinical trial matching, and more. We can also help you and your family find essential resources to assist with daily practical issues. Our services are available via phone and online from 8:30am-5pm ET Mondays-Thursdays, and from 8:30am-4pm ET on Fridays. Call 1-855-220-7777 or go online at LIVESTRONG.org/CancerSupport to connect with a navigator today.

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Iram, Brain Cancer Survivor and a former LIVESTRONG Navigation client

Recognizing that you and your loved ones may want to look for information on your own prior to or instead of contacting a navigator, we created an extensive suite of helpful articles, videos, and tools. Explore this information at LIVESTRONG.org/WeCanHelp.

Within one week of her call with her LIVESTRONG Navigator, Ana

  • Had a better understanding of her cancer diagnosis, the recommended treatment and the potential side effects;
  • She had received free medications to start the process of freezing her eggs at a discounted price;
  • She had scheduled an appointment with another oncologist to get a second opinion after learning her insurance would cover it;
  • She had discussed her financial options with her case manager so she wouldn’t feel overwhelmed with medical bills;
  • She had signed up for an online support group her case manager found for her to learn about ways she could take care of herself during and after treatment; and
  • By using LIVESTRONG Rally to mobilize her support network, she knew which of her family members and friends would be taking her to chemotherapy and bringing her meals for the next two weeks.

By connecting Ana with the resources she needed, LIVESTRONG saved Ana thousands of dollars in fertility preservation and stimulation medication costs, and also saved her the hours and energy it would have taken her to identify these resources and contact them. Contact us to learn about how we can help you today.

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Since 2004, LIVESTRONG Cancer Navigation has helped over 115,000 people like Ana and Iram navigate their cancer at no cost in English and Spanish by being a central hub of cancer support services.

ADA and FMLA: How Laws Work Together

Regardless of the type of job you have, if you need to take time off work because of ADA and FMLAyour cancer diagnosis and treatment, you should learn about your employment rights. More people are familiar with the Family and Medical Leave Act (FMLA), which is the federal law that allows eligible employees to take time off work because of their own serious medical condition or to care for a spouse, child, or parent. The FMLA provides 12 weeks of unpaid leave, per year.

Most people don’t think about the Americans with Disabilities Act (ADA) as a way to take time off work. But they should. The ADA requires employers to provide eligible employees with reasonable accommodations in the workplace. A reasonable accommodation can include changes to work schedules, telecommuting, or even extended leave from work.

Now the FMLA and the ADA can actually work together.

For example, meet Jane. Jane has been undergoing cancer treatment. She has taken time off from work under the FMLA.  She has almost used all 12 weeks of her FMLA leave and her doctor has not yet released her to return to work. She is concerned that she will lose her job if she tells her employer she will not be able to return to work when her 12 weeks of FMLA leave are up.  It is possible that if Jane is also eligible for protection under the ADA, that she could ask for additional time off as a reasonable accommodation under the ADA, if it does not pose an undue hardship on the employer.

However, ADA case law has suggested that additional time off from work will only be considered a reasonable accommodation if the length of additional leave is for a definite period of time. Some recent cases have also shown that employers shouldn’t have rigid leave rules, but be more flexible with leave decisions on a case-by-case basis.

So, if Jane gets to the end of her FMLA leave and she calls her employer and says, “I would like more time off from work as a reasonable accommodation, but I don’t know when I will be able to return”- that is unlikely to be seen as a reasonable accommodation.  But, if Jane calls her employer and says, “I would like three more weeks off work as a reasonable accommodation, because my doctor has released me to come back to work in 3 weeks” – that is more likely to be seen as a reasonable accommodation.

Before making decisions about working through treatment or taking time off work, it is important to get the facts and learn about your options, so that you can make educated decisions about what will work for you.

For more information about your employment rights, visit: http://TriageCancer.org/employment or read our employment-related blogs.

Lymphedema Basics

What is it?

Lymphedema is an abnormal collection of high-protein fluid just beneath the skin. This swelling, or edema, occurs most commonly in the arm or leg, but can also occur in other parts of the body.  The collection of the high-protein fluid attracts more fluid to the region thus increasing swelling.  It also can cause your body to have an inflammatory reaction resulting in scar tissue called fibrosis in the affected area. The presence of fibrosis makes it even more difficult for the excess fluid to be eliminated from the area.  All this fluid prevents the delivery of oxygen and essential nutrients to the area, which then can delay wound healing, create an environment for bacteria to grow, and increase the risk of infections in or below the skin.

Primary lymphedema is a hereditary condition.  Cancer patients are at risk of secondary lymphedema.  Secondary lymphedema is caused by the damage of lymph vessels or the removal of lymph nodes.  In cancer treatment, lymph nodes are removed when a tumor is removed to determine the spread of the cancer. Lymphedema is a chronic condition that cannot be cured, but it can be treated.

What are the symptoms?

The earliest symptoms of lymphedema can include achy, heavy limbs, a tingling in the limbs and maybe even some minor swelling that comes and goes. It is very important that these symptoms are not ignored and that you report them to your healthcare team right away. The earlier you treat lymphedema, the greater the chance of preventing it from becoming a larger, more severe condition.

What is the treatment?

Treatment of lymphedema is called complete decongestive therapy (CDT) and it is broken up into 2 stages: in clinic care and maintenance. The maintenance phase means applying the same treatment techniques to yourself, in your own home.  CMT is a non-invasive therapy that includes:

  • Manual lymph drainage (MLD) – This combines the gentle stretching of skin and deep breathing to reroute lymphatic fluid around the blocked areas
  • Compression bandages
  • Compression garments
  • Special exercises
  • Skin care – Those who suffer from lymphedema are at a greater risk of catching an infection from the bacteria that lives on our skin. Cleansing with low PH soap and using a low PH moisturizer are essential to managing lymphedema

Is lymphedema treatment covered by insurance?

If you have private health insurance, maybe. Coverage for the treatment of lymphedema gets very confusing because those treatments are bandages and garments and not medications.  The ACA (Affordable Care Act) requires all Marketplace plans to cover 10 general categories: (1) ambulatory patient services, (2) emergency services, (3) hospitalization, (4) maternity and newborn care, (5) mental health and substance use disorder services which includes behavioral health treatment, (6) prescription drugs, (7) rehabilitative and habilitative services and devices,(8) laboratory services, (9) preventive and wellness services and chronic disease management; and, (10) pediatric services, including oral and vision care.  The problem is that states are allowed to determine the definition of these categories.  Some states, like California, Louisiana, North Carolina and Virginia have laws that improve the coverage of compression supplies.  Some other states have legislation pending.  Bottom line, you need to call your insurance company and ask them very specific questions about lymphedema treatment coverage.

If you have Medicare, the coverage answer is generally no. Medicare’s failure to cover compression treatment supplies stems from the fact that these items cannot be classified under any existing benefit category in the Medicare statute. The Center for Medicare Services (CMS) does not have the authority to add or redefine benefit categories, only Congress does.  Right now there is a bill before Congress called The Lymphedema Treatment Act (HR1608 and S2373). This bill was first introduced in 2010, and has been reintroduced since then.  It has gathered more and more support over the years, but it is still a bill and not a law.

Lymphedema is very real and uncomfortable risk for cancer patients.  There are resources out there, like the National Lymphedema Network.  Educate yourself before your cancer treatment begins so you can be vigilant in recognizing the early symptoms of lymphedema.  Early treatment makes a difference.

ACA ‘Repeal and Replace’ Bill Unveiled

Repeal and Replace BilLate yesterday evening, a bill was introduced in Congress to repeal and replace the
Patient Protection and Affordable Care Act (ACA or Obamacare).  Prior to the actual introduction of this piece of legislation, there was a lot of speculation about what would be included, and although a version was just released, the House of Representatives is expected to begin considering the legislation in the relevant committees this week.  This is very fast moving compared with other legislation.

The bill is significantly shorter than the ACA and has been named “The American Health Care Act.”

If passed, the law would make several significant changes to our health care system.  For example, the bill would:

  • Eliminate the current requirement that most Americans have health insurance or pay a penalty.
  • Eliminate the current requirement for large employers (50+ employees) to pay a penalty if they do not provide adequate and affordable health insurance to their employees.
  • Require that people have “continuous coverage” or else they could be charged a 30% higher premium. Starting with open enrollment for 2019 insurance plans, anyone who has gone more than 63 days without coverage during the previous 12 months will be assessed a 30% late-enrollment surcharge on top of their base premium.
  • Eliminate the current system of financial assistance to purchase individual health insurance that is based on income and household size. Instead the law would provide tax credits based on age, rather than income. Those under 30 would receive $2,000 per year, up to those over 60, who would receive $4,000 per year. Only individuals earning up to $75,000 a year and married couples filing jointly earning up to $150,000 a year for would be eligible for the full credit. It is estimated that many people currently receiving financial assistance would see a 50% cut in the assistance that they receive under this new law.
  • Change the funding structure of the Medicaid system (i.e., to a per capita payment). This means that each state will receive a set amount of money each year. If states run out of money during the year, they will either have to limit enrollment, limit coverage, or both. This system might end up looking like the failed High Risk Pool structure we had prior to the ACA.
  • Increases the amount that insurance companies can charge older Americans for their health insurance from a 3:1 ratio to 5:1 ratio. Currently, insurance companies cannot charge a 64 year old more than 3 times what it charges a 21 year old. This bill would change that to 5 times what a 21 year old is charged, making health care that much more expensive for older Americans.
  • Eliminate several of the taxes (e.g., the medical device tax, the tanning tax, a tax on high earners, etc.) created by the ACA that were designed to help pay for the financial assistance provisions and expansion of coverage.

The bill does not repeal the protections for people with pre-existing conditions and allowing young adults to stay on their parent’s policy until they turn 26, but also doesn’t address some of the gaps in coverage. For example, the bill does not address the cost of prescription drugs or how much insurance companies can increase rates year to year.

So, while some protections from the ACA will survive, it is anticipated that if this bill passes, many of the 20 million Americans that gained coverage under the ACA will be negatively impacted. For the cancer community, passage of this bill could mean an increased likelihood of facing financial ruin due to a diagnosis.

Of course very few bills are ever passed exactly as they are introduced, so there will still likely be more changes.  Additionally, even if this bill is passed by the House of Representatives, it still has to pass the Senate, and be signed by the President.

Stay tuned for more updates.

What You Can Do

We will have to continue to wait and see what happens, but in the meantime, there is something that you can do.

  1. Share your experience and concerns: Call or email your elected officials and share your health insurance concerns. To find your elected officials or learn more about becoming an advocate, visit our Advocacy resources page. You can also find the Facebook and Twitter handles for the current members of Congress here.
  2. Tell your story: Share your story with Families USA or the National Coalition of Cancer Survivorship (NCCS), two health care advocacy organizations that are working to help our elected officials understand the dire consequences of repealing the ACA and how certain changes to our health care system can impact us all. But they need the stories of real people. If you feel comfortable doing so, you can share your story at http://familiesusa.org/share-your-storyor at org/blog/share-your-aca-story.

When Adult Children Get Sick, It May Be Hard For Parents To Get Information

When Sean Meyers was in a car accident on a November evening three years ago, he was flown by air ambulance to the emergency department at Inova Fairfax Hospital, in Northern Virginia. With his arm broken in four places, a busted knee and severe bruising to his upper body, Meyers, 29, was admitted to the hospital. While badly hurt, his injuries didn’t seem life threatening.

When his car went off the road, Meyers had been on his way to visit his parents, who live nearby in Sterling. They rushed to the hospital that night to wait for news and to be available if Sean or the hospital staff needed anything. But beyond the barest details, no one from the hospital talked with them about their son’s condition or care, not that night nor during the next 10 days while he was hospitalized.

“All the time he was there, the hospital staff was very curt with us,” said Sam Meyers, Sean’s dad. “We couldn’t understand why we were being ignored.”

After leaving the hospital, Sean moved into his parents’ spare bedroom temporarily to continue his recovery. About a week later, he was in their kitchen one evening with his girlfriend when suddenly he collapsed. He was rushed to the nearest hospital, where he died. An autopsy revealed that he had several blood clots as well as an enlarged heart.

For Sean’s parents, the results were particularly wrenching because there’s a history of blood clots on his mother’s side of the family. How much did the hospital staff know?

“It might have saved his life if they’d talked to us,” Sam Meyers said.

A spokeswoman for Inova Fairfax said, “We cannot comment on specific patients or cases.” But she noted that information about a patient’s care can be shared in a number of circumstances.

These days, when people think about patient privacy problems, it’s usually because someone’s medical record has been breached and information has been released without their consent. But issues can also arise when patient information isn’t shared with family and friends, either because medical staff decide to withhold it or patients themselves choose to restrict who can receive information about their care.

The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) established rules to protect the privacy of patients’ health information while setting standards for hospitals, doctors, insurers and others sharing health care information.

Stepped-up enforcement in recent years and increased penalties for improper disclosure of patient information under HIPAA may lead hospitals and others to err on the side of caution, said Jane Hyatt Thorpe, an associate professor at George Washington University’s department of health policy and an expert on patient privacy.

“For a provider who’s uncertain about what information a provider may or may not be able to share, the easiest and safest route is to say no,” she said.

However, the law is actually quite permissive about providers disclosing information to family members and others who are involved in a patient’s care, said Thorpe.

“If the physician thinks it’s in [the] patient’s best interest to share information with mom or dad or whatever, they may do so,” she said.

They may also decide not to share information, however.

Generally, if a patient is unconscious and unable to give permission to discuss his medical information, a doctor may share details about his health with family and friends. But even if the patient is alert and able to make a choice, a health care provider can use discretion in deciding how much to tell family and friends.

Dr. Wanda Filer, president of the American Academy of Family Physicians, recalled a patient who was an HIV-positive sex worker who didn’t want his family to know about his health, even as he was dying. She honored his wishes. “The family was left in the dark,” she said.

State laws may be more restrictive than HIPAA, requiring patient permission to disclose information to others, said Elizabeth Gray, a research scientist at George Washington University’s department of health policy. However, Virginia law generally follows HIPAA on disclosures, said Gray.

In Sean Meyers’ case, there are unanswered questions. For example, “we don’t know what the patient actually said to the providers,” said Filer.

“HIPAA does allow information to be shared with family or friends based on the patient’s wishes or, if the patient cannot make his/her wishes known, then based on the family member’s or friend’s involvement in the patient’s care,” the spokeswoman for Inova said. The health system’s privacy policy states that it may disclose a patient’s medical information to a friend or family member as permitted under HIPAA and provides details about how to request a form to restrict such disclosures.

There’s no surefire way to avoid lapses in communication or ensure that providers get all the relevant information about a patient’s health. Most smartphones today allow people to store health care information that can be accessed by emergency personnel, said Joy Pritts, a privacy consultant who is a former chief privacy officer in the Office of the National Coordinator for Health Information Technology at the federal Department of Health and Human Resources. In addition to listing allergies and other health concerns, people could state their wishes about disclosing their health information.

In the case of adult children, it may be useful for the child to carry a signed document that authorizes health care providers to disclose and discuss health care information with the parents for a set period of time, said Pritts.

It’s no guarantee, but if a provider is on the fence about disclosing information, “it might help,” said Thorpe.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.