Once upon a time there was a man named Sid Vogel, and he loved pickles. He lived the last years of his very good life at Seacrest Village Retirement Communities, making many friends and enjoying adventures of all kinds. Sid’s fun-loving and dedicated daughter Karen Vogel (that’s me) dreamed up Sid Vogel Pickle day to remember and honor her dad. Residents enjoyed a delicious dinner of pickle soup (what?! it’s really good!), pickled tongue on rye, assorted pickles, and even pickle potato chips, while enjoying a special pickle program produced by Karen on Seacrest Village TV. We all could use a little pickle pick-me-up right now! Link to my video: https://youtu.be/6hGtb_FaZLQ
Sometimes it takes a creative approach to get the healthcare you need.
You know how when you go to the pharmacy, your prescription is handed over in a white bag? What’s that about, maybe privacy? The white bag has evolved to facilitate prescriptions via non-traditional routes.
“White bagging” usually means a drug is purchased through a specialty pharmacy and shipped to the provider’s office for administration. It may be called “brown bagging” if the package first goes to the patient’s home. For cancer treatment, it’s a tactic to obtain oncology drugs at a cheaper rate. It’s also an insurance strategy to shift coverage of chemotherapy from the medical benefit bucket to the pharmacy benefit bucket, transferring greater cost responsibility onto patients. The devil is always in the detail.
I’ve been trying for 6 months to get my insurer to cover Synvisc-One, a lubricant for my aging knee. With my history of orthopedic surgery, I’m an ideal candidate. I tried a cortisone steroid injection, a conventional method which helped for 2 weeks. I then submitted appeals – 3 times, including an external independent review. Patient advocacy is what I do for a living; this is not my first rodeo. All appeals were denied for lack of medical necessity. However, once I turn 65 (in 9 months) the drug is magically covered by Medicare. This seems to be more about money than outcomes.
- Cost of steroid: $7. Efficacy: variable. And there’s a reason you can’t get more than a few injections per year, side effects include cartilage damage.
- Cost of Synvisc: $1000 USD – the out-of-pocket amount, whether cash or through insurance as my deductible has not been met. Efficacy: excellent results for most people, pain free for at least 6 months with minimal reactions. It’s like using synthetic motor oil in your car engine to help it run smoother. One day this brand drug will go generic and arthritic baby boomers will demand it to delay joint replacement.
- Cost of Synvisc from a Canadian mail order pharmacy: $486 USD. Timeline: 2 weeks with expedited shipping (regular postal service would have taken 2 months).
Of course I went Canadian. Customer service was excellent with tracking and courteous communication. I apologized for tormenting their country and promised I would visit soon.
My primary care physician was happy to do the injection. The procedure was coded as a simple office visit (that pesky deductible again). He’s properly trained; I didn’t need to wait weeks for a specialty consult. We didn’t sneak into a back alley. The documentation is detailed and honest (“patient brought in her own supply”). I even got a flu shot as a bonus.
What’s the lesson? Don’t take no for an answer. Do your research. Find resources outside of the box. I took the advice I’ve been giving clients – look beyond America for significant savings, not just for drugs. Investigate medical tourism for high quality, accredited hip and heart surgeries, dental implants, and more.
For international price comparisons, here’s my plug for pharmacychecker.com. There are many ways to reduce costs. If you have a complicated scenario, contact me for an initial consultation (at no charge!).
If you are dealing with COVID-19 concerns, check your insurance coverage – frequently. Things are changing rapidly. Washington State’s insurance plans are leading the movement to waive deductibles and out-of-pocket costs not just for testing, but for treatment. Major health insurers in Washington state are waiving co-pays and costs for coronavirus patients. Telehealth (a virtual encounter by phone or computer) reimbursement policies are also changing to adopt to everyone’s needs to reduce physical contact. Some States have reopened enrollment for subsidized health insurance for those who have lost coverage. Don’t make assumptions about your costs, confirm and document every interaction! Insurance plans vary widely with benefits and exclusions, requiring vigilance to protect yourself financially.
This pandemic brings into sharp relief our awareness about already existing concerns with surprise billings, out-of-network care, hidden charges — these are not new issues. Now more than ever, read the fine print, push back if something doesn’t seem right, keep yourself updated. Seek help if you’re unable to get answers. It’s smart to wash your hands, it’s also wise to watch your wallet.
You’ve just found out that you will need to switch health insurance. Maybe it’s open enrollment time. Maybe your COBRA coverage is ending. You’re in the middle of treatment for a serious condition and you’ve looked at the provider directory, and surprise! – your specialist isn’t listed. Now what?
“Continuity of Care” is an advocacy strategy to maintain your providers and maximize your benefits.
Transition to a new health plan restarts the meter for your deductible and co-insurance. It can also force a change in doctors who are no longer considered in-network. If you’re relatively healthy, selecting a new provider, even a primary care physician, may be annoying. However, if you have complicated cancer, heart disease, diabetes or an acute condition, the stakes are much higher. You’re now facing sticker shock and possibly losing trusted providers on your treatment team. You may have upcoming services that can’t be rearranged. Staying with your providers may mean thousands of dollars out-of-pocket. Is it possible to keep the doctors and benefits you already have?
Understand Your Rights and Options
Officially, continuity of care is “the process by which the patient and his/her physician-led care team are cooperatively involved in ongoing health care management toward the shared goal of high quality, cost-effective medical care” (aafp.org). Sounds good in theory. Then reality kicks in about how to pay for services within our complicated, fragmented insurance system.
The Affordable Care Act brought changes, including defining continuity of care as ensuring emergency care. Federal rules were designed to ensure that consumers in the middle of an active course of treatment aren’t left in the lurch if their doctor or hospital is terminated from their health plan’s network.
Continue Care with Your Prior Doctor
Can you get around this barrier? It’s possible with good planning. Exceptions are made by insurance companies based on comprehensive, carefully prepared stories. You will need to prepare paperwork, balance the timing, and evaluate the financial risk that a concession won’t be allowed.
Factors that might apply:
- There are no specialists in the new network with similar licensure, accreditation or training.
- Providers offered on the network panel don’t have the same type of experience or clinical outcomes for your condition.
- You have an upcoming surgery/procedure that would have to be cancelled or delayed due to the change in providers or facilities, raising quality of care concerns.
- You have extensive documentation, including a letter from your prior doctor, that her/his expertise is necessary to maintain your health. Gather your medical records. Make sure you list and understand all of the procedures and services, so that staff reviewing your request can compare “apples-to-apples.”
- If your benefits are being reduced, try to avoid balance billing for non-network care. The health plan can set up agreements with providers to ensure that claims be processed as in-network.
What Else Should I Know?
Ideally, get approval before your new insurance starts. Ask for an urgent review through the case management or appeals department. You can file an appeal to reprocess claims after the services are completed, however getting approval beforehand is better.
Once you get a decision, which should always be in writing, read the fine print. Approval may just be for office visit consultations and nothing else. Imaging services such as MRI and CT scans may not be included. These kinds of tests can be done in-network, with follow-up interpretation done out-of-network. Approval to see your previous providers may only be allowed for up to 60-90 days, especially if you have an individual policy. Employer group policies are typically more generous.
If you’ve been fortunate to have access to a large provider network and think “this won’t happen to me” – think again. Increasingly consumers have to switch plans every year; networks are shrinking due to organizational and financial incentives.
Three Important Tips
- Plan ahead as possible. Ensuring continuity of care will take time and cause stress.
- Talk to your current health care providers as soon as you know your insurance will be changing.
- Submit a request to the insurer to review your case – often there is a form accessible on the member portal (health plan website).
- Read your benefits booklet, sometimes called an “Evidence of Coverage.” It may be available online on the health plan website. This summary will help you understand the policies and process to request exceptions and adjustments.
- Your State Department of Insurance has information and resources to help with questions and complaints about insurance plans. In WA State, look at the Office of the Insurance Commissioner website.
Get ready to scrutinize your choices! The timeframe to review and select health insurance is short for coverage starting next year. Whether you select a plan yourself, use a broker, or hire a patient advocate, it’s important to make sure you make a selection that is a good fit. Don’t assume everything stays the same; benefits are revised every year. You may receive a letter from your current insurer about changes, most importantly about how much your premium will be each month.
If you have Medicare, open enrollment begins on October 15 and closes on December 7. If you have a commercial plan (individual, State/Federal marketplace) open enrollment runs from November 1 to December 15. Some States have extensions.
As an independent advocate, I offer a thorough, customized assessment and neutral recommendations with no allegiance to companies or commissions. If you have a complicated situation it makes sense to get an outside review. Note: I’m WA State-licensed as a “producer” to keep up with industry nuances; I do not actively sell policies.
Here’s my Facebook Live presentation filmed with a local broker to explain how to survive open enrollment season. This video was sponsored by the Washington State Health Advocacy Association. Open Enrollment Tips
Contact me if you would like to learn more about your options.
I wrote a book! Actually my Dad wrote it – over 22 years, and then I added my perspective. It’s available on Amazon in electronic and paperback format. All proceeds go to charity to support seniors and patient advocacy.
Sid’s Story: A Father-Daughter Journey is a poignant, funny and insightful diary about the challenges of aging from two generational perspectives. Sid Vogel, age 95, typed an autobiography started 22 years earlier, sharing his Brooklyn childhood, WWII military experience, telecommunications career and suburban family memories. Karen Vogel, his daughter, chose to blog the challenges of being a parental caregiver over Sid’s last decade. As a professional patient advocate, Karen offers tips and resources for others going through this common, yet often tumultuous transition. Sid and Karen intertwine their stories to make you smile, tear up, and ultimately celebrate the messiness of aging in America.
Please let me know your thoughts and reactions if you read the book, and thank you!
HBO Vice News Tonight, June 26, 2018: Patient Advocates Can Save Your Money – and Your Life
HowStuffWorks.com, July 11, 2018: How to Negotiate a Medical Bill
See In the News for more media coverage about patient advocacy.
People who are ill face a myriad of challenges – both medical and practical. How can you help? Follow these 10 advocacy tips. This checklist is designed for helping a patient (or yourself) with a chronic or complex health condition; it can be used for other situations.
1. Establish a Team
Create a team to support the patient soon after diagnosis.
- Core team should have up to 4 people with a designated leader. Extended team can have more people willing to lend help upon request.
- Determine frequency of team meetings and communications.
- Team members can include the patient’s friends, neighbors, family members (both local and long distance).
2. Figure Out Initial Logistics
Make sure that information is easy to find and plans are made for the future.
- Set up a binder/tracking system to maintain important records – medical, insurance, other info.
- Assess home environment – who lives with the patient, how can they assist?
- Evaluate home safety and fall risks. Is a security/video system needed?
- Create a key phone number list. Post it in multiple places, update every 3 months.
- What to do in an emergency? Clarify red flags and channels of communication.
- Transportation to appointments – is the patient allowed to drive/okay with driving?
- Use a blog or website to efficiently update family and friends.
- Ensure appropriate forms are completed and signed: Power of Attorney, Advance Directive, Healthcare Proxy, Financial Proxy, Will.
- Submit release forms with insurance plans and healthcare providers for authorized representative(s) to discuss patient’s personal and medical information.
3. Coordinate with the Medical Team
Getting the right treatment, at the right time, and in the right way can be daunting.
- Assess healthcare provider expertise – a new medical condition may prompt a change in primary care and need for more specialists.
- Establish a working relationship with providers/clinical support team.
- Arrange medical escort to key appointments. If no in-person escort is available, explore phone conferencing or video recording.
- Check health plan and insurance online portals for summaries and messages.
- Manage calls/emails to/from providers to schedule services and appointments.
- Maintain a current list of drugs, including Rx, OTC, supplements, vitamins.
- Learn about marijuana availability (legal or medicinal use) to help the patient research options for symptom management.
- Prescription management – ensure meds are taken on schedule.
- Consider ordering a medical alert bracelet or monitoring system. Make sure to include an “In Case of Emergency” (ICE) phone number.
- Acknowledge when you’re out of your league; refer to trained experts for guidance.
4. Understand Health Insurance
Insurance rules are hard to interpret, especially when paperwork starts mounting.
- Determine deductible, coinsurance, copays, excluded and non-covered services.
- Review claims to ensure correct payment and patient financial responsibilities.
- Assess options and prepare forms for health plan enrollment/switch of coverage.
- Prepare and manage appeals for out-of-network care.
- Research SSDI/Medicare/Medicaid eligibility, monitor as condition/income changes.
- Confirm other policies – disability, long term care, life insurance, dental, vision.
5. Organize Personal Tasks
All those everyday errands can become overwhelming when someone is sick.
- Calendar management – make sure all appointments are entered with location and phone number, transfer info from paper to electronic calendar.
- Maintain a website username/password list, stored in a place known by ICE contact.
- Set up a white board/chalk board in patient’s home to list important information.
- Confirm who has access to bank accounts and credit cards (as backup/proxy).
- Ensure that insurance, taxes, utilities and mortgage bills are paid, as applicable.
- Home repair – keep a task list and note when tasks are completed.
- Assist with writing, reading, email, retrieval of voice mail messages as needed.
- Set up a paperwork and electronic filing system that is easy/will be used by patient.
- Mail (USPS) management, prioritize key items for follow up.
6. Consider Home Care
Home-based care is ideal when assistance is needed to maintain independence.
- Research and scrutinize licensed agencies, obtain recommendations.
- Attend initial intake to help patient determine type and frequency of services.
- Set up meal/food delivery and mail order drug delivery.
- Have others do housekeeping, cooking and cleaning.
7. Ensure End of Life Planning
Planning is important at all stages of life, crucial for those with a terminal illness.
- Research how to archive personal and family history and photos.
- Set up a palliative care consult for the patient to voice values/preferences.
- Encourage use of hospice services once treatment options are exhausted.
- Understand transition stages of dying and support options, including physician-assisted suicide.
- If the patient has a pet, ensure there is plan for the pet after the patient has died.
- After the patient’s death, explore help for family and caregivers to navigate tasks and emotional needs.
8. Seek Professional Help
Consider which professional services make sense. Determine role, availability, cost.
- Patient Advocate: Why Hire an Advocate?
- Clinical Case Manager
- Religious/Spiritual Support
- Social Worker
- Accountant/Bookkeeper/Tax Preparer
- Home Repair Person
9. Watch Out for Caregiver Fatigue
Take care of yourself and the team.
- Ensure that primary caregiver/family members/team members regularly touch base to assess roles and resources.
- Encourage and practice coping skills including stress management and meditation.
- Learn signs of burnout: withdrawal from friends and family, anger, denial, anxiety, sleep disruption, exhaustion, getting sick more often.
- Ensure that children have support to process the situation as a parent becomes more challenged.
- Express appreciation to each other.
10. Be Patient-Centered
Every person and situation is unique. Respect autonomy.
- Every patient has rights and the final say to determine lifestyle and treatment choices (unless declared incompetent by medical professionals).
- If you see something, say something. Although it’s important to respect privacy, alert the primary caregiver if you notice changes in behavior that may need follow up or endanger safety.
- Advocacy is validated by every action you take. You can make a difference.
Lots of apps and social media resources are available. Here are some good ones.
- Google shared calendar – determine who has access and editing privileges.
- Dropbox – store large files and facilitate sharing of information.
- CaringBridge, PostHope or similar site for updates.
- GoFundMe or similar site for fundraising and crowdfunding.
- Facebook sites – open or closed forums with condition-specific support.
- Medical information and patient support websites – be wary of sites with ads.
- Phone apps, often condition-specific.
- Lyft, Uber, other ridesharing apps used on smartphones or laptops.
- TSA Cares – helpline to provide assistance for airport screening.
- Munchery, Instacart, Blue Apron, Meals on Wheels, Meal Train – food delivery.
When shopping for banks and shoes, we scrutinize for the best fit at the best price. When hunting for a retirement community, how do we decide what’s suitable? Should family members have a role?
Experts say that honest and proactive discussion with family before moving anywhere is best. However, this isn’t always an option. Geographic challenges arise when children don’t live nearby. Anxiety and differing opinions between spouses or among siblings can complicate matters. Adult children may struggle to recognize that their parents are entitled to autonomy and dignity. Increasingly, there aren’t children in the mix – “elder orphans” are making decisions solo. For everyone, it’s often tough to face the disruption of leaving a familiar home for a different setting.
I asked 8 qualified experts – residents of local retirement communities – for their perspectives. Some moved in to their communities recently, others have been there for many years.
KV: What’s the most important factor: location, price, or amenities?
Hilda, age 102. “Visit a number of places to see what they look like, location is important. I researched a long time on my own. When children are involved, make sure to talk to them about their budget and expectations if your resources are limited. Once you move in, it’s up to you how to get along with other people. Like any neighborhood, it’s a melting pot.”
Katya, age 85. “My children decided for me. Safety was a big concern and they understood that need. I also preferred to be with people of my own faith.”
Dorothy, age 94. “It’s more important that the facility be comfortable rather than fancy. Evaluate what you previously considered necessities, such as cooking, and how you can adapt. Be prepared to get rid of stuff, it’s not essential and you won’t miss it.”
KV: What if you don’t fit the “typical” profile?
Ruthie, age 73. “I’m younger than most residents, which was a hard adjustment. I wanted a place with views, good food and nice people. There were no children to help me. My friends are now my family.”
Bob, age 80. “My wife died and I was forced to move by my children. This is where my mother lived 20 years ago, so I wanted to come to this community. I had no other place to go. I’m satisfied.”
Suzy, age 89. “I was recently widowed when I decided to relocate. I looked at 4-5 places. I would say shop before you need to have someone else do it, especially your kids. The ability to access higher levels of care onsite was a big factor for me.”
KV: What about couples?
Goldie, age 88. “I moved here with my husband, then he died. Beware that many places can’t accommodate couples, especially when one partner gets sicker and needs to live in a different unit. My children were in agreement on everything, it made the transition much easier. Don’t just listen to the marketing pitch – speak to residents who live there.”
Priscilla, age 96. “I had a husband and also friends who lived here, I knew I would fit in. My children didn’t influence my choice. Make sure the residents at the community are people you want to spend time with.”
My personal family story
My elderly parents had been researching housing options for years and disagreed on priorities. I tried to block the logjam with no success. It ultimately took a crisis, my mother’s death, to force a decision. At age 90, after 66 years of marriage, my father moved to a retirement community ideal for his needs and embraced a new independent phase. And I learned that although planning is great, life decisions sometimes take their own course.
Tips for the next step
- Searching for a new home takes effort. Start early before it’s an emergency.
- The involvement of family members may help – or not. Don’t make assumptions, talk to your parents (or kids) as feasible.
- Do your research! Good information is available online as well as through local community aging and housing agencies.
- An advocate may be able to offer focused assistance. See Resources for some ideas.
Being diagnosed with cancer can be overwhelming. Figuring out your insurance coverage can bring added stress at a time when you need to focus on treatment.
Ten valuable tips to empower yourself:
- Read the fine print to learn your benefits – in detail. What is covered: surgery, outpatient infusion therapy, is chemo considered medical care or prescription drugs? If you have short term or catastrophic insurance, are there exclusions or waiting periods?
- Register online with your health plan to access the documents you’ve buried or thrown out, plus see your claims as soon as they have been paid. Most health plans also have smartphone apps.
- Request a case manager from your health plan to help you navigate the system – it’s free.
- You may quickly reach your annual deductible, along with your maximum out-of-pocket costs; monitor your payments. Providers won’t necessarily know when to stop charging co-payments; this is your responsibility to monitor. Explanation of benefits (EOB) statements you receive (or access online) will state when you have reached these amounts.
- Be prepared that out-of-network providers can generate huge bills. Do your research to learn where to get the best care, locally as well as nationally or even abroad. Then evaluate if you are willing to pay cash in case your health plan doesn’t allow out-of-network services.
- Most insurers allow at least one second opinion, sometimes more, as long as the visit is pre-approved. Make sure to your records are sent over to the consulting provider, or bring copies. Online portals have visit summaries; you may have to order a CD to be picked up at a hospital.
- Your health plan may allow out-of-network consultation – typically only for an office visit where your records are reviewed, not for treatment. If you are fortunate enough to get an outside referral approved, determine which services are included. Lab testing by blood draw may be fine but “advanced” imaging such as MRIs and CT scans may be excluded. Keep in mind that most testing can be done in-network, it’s the interpretation of the data where you need the best expertise you can find.
- If your request or claim is denied, file an appeal. There are 3 levels of medical or administrative review: internal physicians paid by the health plan (internal review), outside peer specialists (external review) and State Insurance Department consultants (independent review). Writing an effective appeal letter can be hard. Hire an advocate or ask friends to read your letter to make it’s focused on medical necessity and make sure the tone is not overly emotional.
- Use a patient advocate to ease your burden. Advocates can suggest resources, investigate clinical trials, escort you to appointments, scrutinize claims, manage paperwork, prepare appeals and serve as your trusted representative. Make sure the advocate sends in a privacy release form to get authorized access with your health plan and providers.
- Social media and cancer support websites (CancerCompass, OncoLink, CancerCare, Facebook) can be a great way to find out how others are handling complicated or chronic illness.
Planning ahead will facilitate peace of mind during a chaotic time. Document your questions, keep records and push back when necessary to get the best care and insurance coverage possible!
Thanks to Cancer Champions for sharing this post on their blog.
Contact me to discuss your needs.