Dealing With The Hard Truth Regarding a Loved One’s Health

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A Caregiver’s Acceptance of a Loved One’s Condition Isn’t Giving Up

Dealing with hard facts can help you better face challenges down the road

by Barry J. Jacobs, AARP, August 6, 2019 

A couple embracing outdoors


“Yes, I know she has what you call ‘dementia,’” 75-year-old Sam said, his white-whiskered face set sternly as if challenging me. “But I choose not to focus on that very much.” He added, “Barbara and I have been married for over 50 years and she’s still the same wonderful woman to me.”

His hard look seemed to soften a bit when he mentioned his spouse and the love of his life. I was moved by his sentiment: No matter how much Barbara’s thinking skills had deteriorated over the last few years, the essence of who she was — and even how she was — were still basically the same to him.

Nonetheless, I worried about the two of them. Because Sam was intent on limiting the degree to which their lives were disrupted by her condition, he wouldn’t accept support services, such as home health aides and adult day programs, that are often helpful for patients with dementia. Likewise, because he played down that he was a dementia caregiver, he wouldn’t consider attending education or support groups or asking their adult children and grandchildren to pitch in.

It was as if Sam felt that being loyal to Barbara meant largely ignoring her disease and trying to live as fully as they always had. To his way of thinking, dwelling on dementia’s dire consequences and admitting her limitations would be giving in to it — something no strong, caring husband like him would ever do.

I have met many older spousal caregivers over the years in hospitals, primary care offices and retirement communities who refused to buckle to the reality of a loved one’s condition, be it dementia, Parkinson’s or cancer. It was as if they thought they could keep illness from touching them by rejecting all reminders of it, including educational pamphlets, medical treatments and social supports. It was only when catastrophe struck — a bad fall, sudden confusion, or medical complication and hospitalization — that they’d grudgingly admit, “Yes, my loved one has a bad condition for which we need some help.”

Get help caring for a loved one with dementia with AARP’s Care Guide

Caregivers who can accept the course of a loved one’s illness, learn to contend with its many challenges and then savor the time they still have left with one another are better able to cope with whatever unfolds. How can all caregivers achieve that level of flexibility and adaptation? Here are some ideas.

Positive thinking can be negative: Many caregivers are saddled with the belief that staying continuously positive gives them the best chance of warding off the effects of a care receiver’s illness. They refuse to entertain more negative thoughts (or engage in what’s disparagingly called “stinkin’ thinkin'”) as if they could be potentially harmful. But positivity not based on reality is self-delusion. It prevents caregivers and care receivers from taking necessary steps to face the challenges of caregiving squarely. It maintains short-term happiness at long-term peril.

Negative feelings can be positive: Similarly, some caregivers believe that expressing negative emotions, such as sadness and worry, can increase the stress and guilt felt by care receivers and hurt them, too. But when caregivers are unremittingly upbeat, then their loved ones often feel prohibited from expressing any twinge of sadness or anxiety. That doesn’t make them cheerier; it makes them feel more alone with their conditions and emotions. It is better for caregivers to share their negative feelings with care receivers and consequently draw closer in commiseration.

Accepting isn’t despairing: Despair is defined as the complete absence of hope. But that’s not the usual end result of acceptance. When a caregiver can reflect upon all the ramifications of a loved one’s condition, he is taking command of caregiving to the best of his abilities. He makes decisions based on an awareness of the facts. He meets day-to-day problems by generating solutions that are realistic. That doesn’t lessen hope for living a life of the highest possible quality; it increases it.

Accepting can be cherishing: Living with acceptance that a loved one is declining doesn’t sap enjoyment from time spent together, it intensifies it. There is something about having an awareness of the care receiver’s vulnerability that concentrates the caregiver’s mind and makes time itself more precious. We do our best with eyes fully open. We take in our loved one for as long as we can. Afterward, we cherish them and all we did to try to help them.

Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of the book AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter@drbarryjacobs and on Facebook.

4 things Caregivers need to know about taxes

When you work for a family on a short-term basis, you still need to keep track of your payroll

Updated 2019-05-30

Sometimes families only need care for their kids or aging loved ones for a short period of time. If you have a flexible schedule and are able to work for a few weeks at a time, these temporary jobs can be a good source of employment and income. But as with any other job you’ve had in the past, you still need to keep track of what you’re earning because it’s likely that the family will need to make taxes part of your employment arrangement.

Whether you’ve  been hired for your first temp caregiving job or have been stringing together short-term jobs for years, here are four things you need to know to keep your finances in order:

1. Temporary caregivers are still employees, not independent contractors

When you’re working in a family’s home following the schedule they set and the rules they’ve outlined, the IRS says you’re their employee. This classification is determined by the nature of the work performed, not by how much you are paid or the amount of time you work for the family. You may have heard or read online that you can get a 1099 from the family and report your earnings as an independent contractor, but that’s actually illegal. Instead, the family should give you a W-2 after the end of the calendar year to use for your personal income tax return.

2. Your employer may not need to withhold taxes from your wages

Household employment tax requirements are determined by the amount of gross (before taxes) wages paid to an employee. As a temporary caregiver, if you earn less than $2,100 in a calendar year from a family, the family is not required to withhold any taxes from your pay. This is because in 1995, the IRS modified household employment tax requirements to exempt low wage earners from the tax process. This is sometimes referred to as the “casual babysitting exemption.”

3. If you earn $2,100 or more from a family, taxes will need to be withheld

If family pays you $2,100 or more in a calendar year, they must follow household employment tax withholding and reporting obligations. Briefly this means Social Security, Medicare and income taxes will need to be withheld from your pay and the family will pay some employment taxes of their own. These taxes provide you with several short and long-term benefits, such as credit toward your eventual retirement income and the ability to collect unemployment when your job ends.

If the family fails to withhold taxes and file employment tax returns, they’re in violation of IRS Publication 926 and you won’t be entitled to the benefits mentioned previously. Hopefully, you won’t face that situation, but if you do, the best thing to do is to report your wages and pay your income taxes at the end of the year.

4. You are responsible for keeping track of your wages

If you are paid less than the $2,100 threshold per family you work for, you will most likely not have any taxes withheld from your pay, since your employers are not obligated to do so. However, you are still required to track the amount of money earned from every employer, no matter how little you are paid. This is because the IRS requires you to report all the wages you earn throughout the year by filing a personal income tax return, even if your wages are not high enough to trigger a tax payment. To do this, just add up all the money you’ve earned during the year and record the total on the “Other Income” line of your tax return.

Next Steps:

How To Hire a In-Home Caregiver

Finding the right caregiver for your loved one

What’s the difference between types of in-home care workers?

  • Personal Care Assistants (PCAs) are not licensed and have varying levels of experience and training. They serve as helpers and companions — providing conversation, bathing and dressing, neighborhood walks, light housekeeping and meals. They can offer transportation to shopping and appointments, as well as prescription pickup. Training requirements vary by state, and some states do not have formal requirements. PCAs are the least expensive care providers, but they are typically not covered by Medicare or other types of health insurance. The median hourly wage is $10.54, according to the Bureau of Labor Statistics (BLS), but the hourly charge for this and other in-home health service can be considerably higher in tight markets and urban areas. Expect PCA services to be an out-of-pocket expense.
  • Home Health Aides (HHAs) monitor the patient’s condition, check vital signs and assist with the necessary parts of daily living, including bathing, dressing and using the bathroom. HHAs also provide company, do light housekeeping and prepare meals. HHAs are trained and certified, and requirements differ from state to state. The median hourly wage is $10.87, according to the BLS. 
  • Licensed Nursing Assistants (LNAs) and Certified Nursing Assistants (CNAs) observe and report changes in the patient, take vital signs, set up medical equipment, change dressings, clean catheters, monitor infections, conduct range-of-motion exercises, offer walking assistance and administer some treatments. All medical-related tasks are performed as directed by a Registered Nurse (RN) or Nurse Practitioner (NP). CNAs also provide personal patient care — such as feeding, dental help, bathing, bathroom assistance and home tasks that include changing bed linens and serving meals. Median hourly wage for LNAs is $12.78, according to the BLS.  
  • Skilled Nursing Providers meet federal standards for health and safety and are licensed by the state. They manage, observe and evaluate your family member’s care, and provide direct care that nonmedical and home health aides cannot — including administering IV drugs, tube feedings and shots; changing wound dressings; providing diabetes care; and providing caregiver and patient education. Some are trained in physical therapy, occupational therapy and speech therapy. Medicare covers home health skilled nursing care that’s part time and intermittent, and arranged by a Medicare-Certified Home Health Agency (CHHA). Median hourly wage is $21.20, according to the BLS.
  • Registered Nurses (RNs) hold a nursing diploma or associate degree in nursing (ADN), have passed the NCLEX-RN exam administered by the National Council of State Boards of Nursing (NCSBN) and have met all the other licensing requirements mandated by their state’s board of nursing. They provide direct care, can assist doctors in medical procedures, offer guidance to family members, operate medical monitoring equipment and administer medications. 

Step by Step: Hiring a Caregiver

Step 1.

With your loved one, write down needs and limitations, level of assistance needed, likes and dislikes, expectations and doctor recommendations. If your family member is covered by long-term insurance, Medicare or Medicaid, you’ll need a doctor’s report confirming that the need for in-home care. Medicare does not cover personal care if it is the only care needed.

Step 2.

Find a trustworthy, compassionate and responsible caregiver. Do you feel best going through an agency? Friends? A registry?

If the answer is:

An agency

Regardless of whether your family member is Medicare-eligible, compare and research agencies in your area by using the Medicare guide to patient-rated agencies and arrange a consult. Before you sign an agency contract, review our checklist of important questions. Ask them.

  • Upsides:
    • Prescreened workers. Caregivers have undergone and passed a background check.
    • Relevant experience. Agencies are likely to have some caregivers with experience in caring for people struggling with the same illness or condition affecting your loved one.
    • Backup care. If the caregiver is sick or doesn’t work out, an agency usually can find a replacement quickly.
    • Addressing problems. Concerns and complaints are reported to and handled by a supervisor.
    • Fast upgrades. If care level or diagnosis changes, most agencies can quickly provide a worker with more training.
    • No paperwork. You pay the agency. They take their percentage, pay the worker, and handle payroll, taxes and scheduling.
    • Liability protection. If a caregiver is injured on the job, the agency covers the cost.
  • Downsides:
    • Expense. You pay more — sometimes substantially more — for an agency-provided caregiver.
    • Limited negotiation. Individuals are generally more flexible about hours, overtime and duties than agencies.
    • Minimum hours. Many agencies do not allow a part-time schedule.
    • Little choice. The agency chooses the worker, who may or may not mesh well with you or your family member.

Option 1: Ask friends and neighbors who have employed caregivers for recommendations, names, phone numbers and hourly rates of those they found to be outstanding. Get specifics. Your neighbor’s priorities might not be yours.

Option 2: Consult the community. Leave your name and number and the particulars of the job — including needs and hourly wage — with the receptionists at nearby houses of worship, senior centers, local gyms, yoga studios and community centers.

Option 3: Call your Area Agency on Aging and ask if they have recommendations.

A registry

Local — and sometimes state — employment registries will have lists of available nurses and aides in your area. You call the person directly.

  • Upsides:
    • Flextime. It is more likely you will find a part-time caregiver or one who can work an unusual schedule.
    • Spend less, pay more. Without the higher agency fee, you may be able to pay more for a more skilled or experienced provider.
    • Your rules. Agency caregivers must follow agency rules. With a nonagency caregiver, the two of you and the person needing care can figure out what works for everyone.
    • Better fit. You may be more likely to find a caregiver who speaks a second language, shares interests with the care recipient or has personality traits your loved one will appreciate.
  • Downsides:
    • Time. A DIY search and screening can take days to weeks. Agencies often can arrange next-day care.
    • Emergency coverage. Sick days, vacation or a fast departure for a new job can upend everyone’s schedule. There’s no fallback plan unless you arrange it.
    • You investigate. You will need to screen and verify credentials.
    • Paperwork. You are responsible for getting an Employer Identification number (EIN), and for withholding and paying Social Security, Medicare and unemployment taxes. You also must confirm that the applicant can work legally in the United States.  
    • Protection. Agencies insure their own. You may be held liable for an on-the-job accident unless you buy liability insurance that covers the caregiver. Workers’ comp — which covers lost wages and medical care — is required by some states and recommended in all by some legal experts.
    • Training. Agency health aides are trained. You may want to pay for a training class or refresher.
    • You’re the boss. The person who handles your complaints is you.

Step 3.

You — and your loved one, if possible — should interview applicants together. Prepare written questions. Be clear and honest about job requirements. 

A major consideration when hiring a caregiver is the associated cost. In some cases, you may be able to get help paying for in-home care.

Making Your Home Safer for Live-In Parents

Job #1 when moving your aging parent or loved one into your home — or helping them age in place in their own home — is making it safe. Take a look at the home from the perspective of a person who uses a wheelchair or is a fall risk.

You need a plan.

1. Call in a pro.

2. Modify. Adapted homes can be stylish, comfortable and safe for all ages. You may need:

  • zero-threshold entryways
  • wide doorways and halls
  • offset door hinges to make room for a wheelchair, walker or two people walking side by side
  • controls and switches that are reachable from a wheelchair or bed
  • a waterproof seat in the shower
  • a stair-climber
  • a raised toilet seat
  • a shower chair
  • a  frameless walk-in shower with a sloped floor instead of a step-over threshold
  • put textured no-slip strips in the bathtub and shower to lessen the chance of a fall

3. Make simple fixes. Every year, 1 in 4 adults over age 65 take a fall. To lessen the chances:

  • Remove throw rugs.
  • Use rubber-backed bathmats.
  • Move laundry facilities to the first floor.
  • Remove wheels on chairs.
  • Put nonskid treads on steps.
  • Keep steps clear.
  • Apply nonslip wax to floors.
  • If wandering is a worry, add monitors and sensor alarms.
  • Repair loose carpeting or raised areas of flooring.
  • Move small and low furniture.
  • Clear electric cords and clutter.
  • Add a hall railing.
  • Switch out standard doorknobs for lever handles.
  • Add a raised toilet and grab bars.
  • Remove locks from bedroom and bathroom doors so you can get in quickly, should your loved one fall.
  • Put a railing on the hall wall.
  • Swap out your recliner for one that raises and lowers — to make getting up easier.

4. Do your homework. Call your area agency on aging, Veterans Affairs office, or faith-based, civic or other community-based organizations for in-home care provider referrals. You should:

  • Run background and reference checks.
  • Monitor their work.  
  • Stop by at unexpected times.

5. Stay out of hot water. You may want to:

  • Invest in easily installed sink, tub and shower antiscalding devices that recognize when the water is too hot and stop the flow. Cost: about $40.
  • Option 2: Adjust the thermostat on your water heater so it stays at or under 120 degrees.

6. Light the way. As we age, we need more light. Install:

  • bright lights in hallways, closets, stairwells
  • extra lamps — consider models that turn on and off with a touch
  • outdoor motion sensor lights and path lights

7. Modify the kitchen. Put frequently used items on an easy-to-reach refrigerator shelf. Also:

  • Consider using automatic devices to turn off the stove and oven or installing an induction cooktop — which turns off when a pot is removed from the burner.
  • Hang a fire extinguisher within reach.

8. Check alarms.

  • Install smoke and carbon monoxide alarms in your loved one’s bedroom, and test existing alarms.

9. Stay connected. If your loved one is home alone:

  • Check in with Skype or another video-chat app.
  • Mount a motion-activated security camera in the home — with your loved one’s permission.

Helping Your Caregiver To Do Their Best

Develop a range of strategies so the care receiver feels supported, not challenged

by Barry J. Jacobs, AARP, January 2, 2019 

Home caregiver comforting senior man sitting at kitchen table


During my caregiving years, my mother and I had many tense moments about rousing her from bed to get ready for medical appointments. I’d pop into her bedroom and wake her, then remind her a few minutes later that she really needed to get up, then cajole her, plead with her, and ultimately use my sternest, I-mean-business tone. I thought I was helping motivate her in those instances. She’d say she felt like I was bullying her.

I never liked being called a bully and denied it was so. After all, we were always in a rush. If I pressured her, I reasoned, then it was for her own good. But in retrospect now, 20 months after her death, I wonder if I was in the right. What really mattered to her during those times? Was she clinging to the comfort of her pillow because she was still tired or even depressed? Was it more important for her to have control over her own life and sleep in than submit to another routine exam with a doctor who couldn’t help her much anyway? Instead, I overruled her and expected her to “obey” me. 

I don’t think I’m the only family caregiver to transgress the blurry line between supportive guidance and arm-twisting. Sometimes when tired or frustrated or impatient — or when there really is a situation of dire urgency — many caregivers are prone to pressure care receivers too hard to conform to schedules and regimens. We rationalize the approach we’ve taken on the basis of practicality and expedience. But many of us second-guess ourselves later about whether it was necessary.

AARP Care Guide: Help for common caregiving conflicts

Certain things do have to get done. Otherwise, family caregivers might feel that they are guilty of irresponsibility and neglect. But how can we manage to be coaches, not bosses, and effective motivators, not feared bullies? Here are some ideas.

Rarely put tasks over the relationship: There are few caregiving tasks so crucial that they warrant trampling a care receiver’s feelings in the process of accomplishing them. Rather, there are what I think of as front- and back-burner issues. On the front burner are mostly issues having to do with safety, such as taking medications appropriately or driving capably, for which the caregiver should be firm and persuasive. However, most other issues are on the back burner of importance and need for action. For these items, caregivers should allow care receivers to exercise as much choice as possible and shift plans accordingly. That means being more flexible and accommodating, as well as respectful. In retrospect I could have scheduled my mother’s doctor’s appointments later in the day, even if it was less convenient for me, or canceled them altogether.

Develop a range of approaches and strategies: Great coaches are attuned to the moods of their players and apply the right touches at the right time to encourage maximum effort and performance. Great caregivers, too, can sense what care receivers are feeling at a given moment and tailor their requests — for instance, appealing to reason, resorting to silly humor or changing the subject entirely — to the approach that will motivate.  In general, I found that a gentler style was more apt to work with my mother, but there were also times that she wouldn’t agree with me at all. That’s when I would turn to my wife, who, with a smile and an even softer tone, could somehow win my mother’s cooperation making the same request she’d already rejected from me.

Solicit and heed feedback: We can sometimes get so wrapped up in the hectic pace of caregiving life that we lose a sense of how we are coming across to others. But we can listen to feedback from family members about how we are conducting ourselves. Take a moment to say to the care receiver, “We are having to work together more closely nowadays than we ever have before. Am I treating you the way you want to be treated?” Regard the answer seriously.

Beware of creeping bullying: No caregiver sets out to be the sort who pushes others around. But if he finds that applying pressure to the care receiver is the most efficient way of completing his many tasks, then he may slowly tend toward using sheer force. Caregiving isn’t about efficiency, however; it’s about caring. And nothing could be less caring than bending people to one’s will. We need to be aware of the excesses of our own styles and never convince ourselves that the ends justify the means.

Barry J. Jacobs, a clinical psychologist, family therapist and healthcare consultant, is the co-author of the book AARP Meditations for Caregivers (Da Capo, 2016). Follow him on Twitter @drbarryjacobs and on Facebook.

More Caregiving Advice

Getting Paid To Care For Elderly Family Members

You can be paid for your work and treated fairly

by Barry J. Jacobs, AARP, January 30, 2019 |

Son explaining medicine dosage to his elderly mother


Does money change everything, as the old saying goes? If Alicia had won the lottery, then she might understand why her siblings were now treating her a little differently. But all she’d done was become certified as a home health aide so she could receive a modest hourly wage from her county for dressing, grooming and feeding her Parkinson’s disease-stricken mom. Nowadays, however, her sisters seemed less interested in pitching in with caregiving tasks since family caregiving had officially become her “job.” Even her mother seemed to be asking more of her, as if she were now the hired help and not her youngest daughter.

More states are allowing care recipients to hire and pay family members as their home health aides under what is sometimes called consumer-directed care. These are popular programs for obvious reasons: Family members — some of whom had to quit or cut back on work to take care of a loved one — are now being paid at least a little money for all the care they provide. No one is getting rich, but at least they are better able to cover some bills. More importantly, receiving an hourly wage gives them a feeling of being publicly acknowledged and valued rather than (as is too often the case) feeling invisible and underappreciated.

In my clinical practice, I’ve also worked with many families in which a parent’s decision to leave a house or the bulk of an inheritance to the primary caregiver roils family dynamics like nothing else. The caregiver who will receive money becomes immediately suspected by others of playing the Altruistic Child to cash in. Anger and conflict frequently result.

Caregiver’s guide for dealing with common caregiving conflicts

How can family caregivers earn some compensation for their devoted efforts but not be regarded as mercenaries by other family members? Here are some ideas:

Demonstrate transparency: Many of us are inclined to keep our financial affairs private, even when among family members. But because caregiving is inherently a family enterprise, it is vital that we are aboveboard about monetary transactions, especially if we are profiting in some way from a parent’s need for assistance. Let other family members know about the opportunity to earn an hourly wage for providing hands-on care. Tell them exactly what you’ll make. Communicate plainly that this money is going to offset costs incurred by caregiving activities — e.g., expenses for medication copays, lost salary, the price of fuel for driving to the doctor.

Keep in mind what others think is fair: It may seem fair to you to receive money for the many sacrifices you are making on behalf of someone you love. (I agree with you.) But there are other family members who may believe they are also making sacrifices — though, admittedly, not as many as you are — and deserve to be compensated to some degree as well. For them, it may seem patently unfair that you get glory and money and they get neither. Don’t begrudge or disagree with their feelings. Empathize with them instead and tell them that you greatly value their participation in caregiving. You don’t have to fork over some of your newly earned cash to prove that. Just express your appreciation that the two of you are part of a cohesive caregiving team whose sole mission is to help Mom.

Preserve your parent-child relationship: Care recipients can become increasingly demanding over time even when money is not involved. But when a family member has been hired for a caregiving job, there is a greater tendency for the care recipient to treat even close relatives with impatience and barked orders. Even when you’re on duty, though, you’re not just an employee. Complete the necessary tasks but let your parent know that you’re there for love, not money, and that you expect that your personal rapport with one another is not going to be suddenly altered by changed economics.

Weigh the money’s worth: For some families, receiving a caregiving salary will be an unmitigated boon about which everyone is thrilled. For others, there will be no end to the resentment, jealousy and sniping. Judge for yourself whether working as a loved one’s home health aide is worth it. If it isn’t, then don’t be resentful in kind. Instead, be consoled that peace in the family may ultimately be of greater value than any amount of money in the pocket.

More on Caregiving Compensation

Why Our Prescription Drugs Cost So Much

Nothing stops drug companies from charging the highest price the market will bear

AARP 2018

Why Drugs cost so much


En español | PRESCRIPTION DRUG PRICES in America are among the highest in the world. On the campaign trail, President Trump said drug companies were “getting away with murder.” Is that true? Or are these firms the beneficiaries of a system that turns a blind eye to excessive profit-making at the expense of society?

In this report, we explain in simple, clear terms why drugs cost what they do. We also examine the drug-price debate in Washington, explain how the complicated business of medicine works and give you ways to save money at the pharmacy.

AARP stands by your side to help lower drug costs and make sure all Americans over 50 have affordable access to the medicine they need to live their fullest lives. — Robert Love, editor in chief

Download and Share This Special Report

For Susan Goodreds,Repatha has been as close as you can get to a miracle drug. The 74-year-old resident of Delray Beach, Fla., has a hereditary disorder that causes dangerously high cholesterol levels. Without medicine, her “bad” cholesterol count was in the 300s; statin drugsbrought the count to about 220. With Repatha, it has fallen to 35. 

The catch is, simply, cost. Repatha, a new medicine that made headlines in March when a large-scale study confirmed some of its beneficial effects, costs $14,000 annually, or nearly $1,200 for each month’s injection. Even with insurance, Goodreds pays $4,650 a year for it. Add in other prescription drugs and medical costs, and her yearly health bill is $13,500 — equal to most of her fixed income. “I’m faced with some hard decisions about whether to stay on the drug,” Goodreds says. “I still have a lot of things I want to do with my life.”

If you are concerned about the high cost of drugs, let your member of Congress know by calling 844-453-9952 toll free.

Confusion, anxiety and anger over the high cost of medicine has been on the rise for more than a decade. But even as the chorus of criticism has grown louder, the price of pharmaceutical products in the U.S. continues to skyrocket.


  • The cost of Bavencio, a new cancer drug approved in March, is about $156,000 a year per patient.
  • A new muscular dystrophy drug came on the market late last year for an eye-popping price of $300,000 annually.
  • In 2016, the FDA appproved Tecentriq, a new bladder cancer treatment that costs $12,500 a month, or $150,000 a year. 
  • Even older drugs that have long been on the market are not immune: The cost of insulin tripled between 2002 and 2013, despite no notable changes in the formulation or manufacturing process. And the four-decade-old EpiPen, a lifesaving allergy medication, has seen a price hike of 500 percent since 2007. Public outrage this past winter over its price tag ($609 for a package of two injectors) helped to speed up the arrival of lower-cost generic variations to the market.

The issue of high drug prices came up frequently in the recent election cycle, and in a speech in Kentucky in March, President Trump called drug prices “outrageous.” Increasingly, Americans are asking the same question of pharmaceutical companies: Why? 

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VIDEO: Cancer patient Heather Block says Congress needs to protect seniors and all taxpayers from price gouging by big drug companies.  

The Ways of Drug Pricing

“The simple answer is because there’s nothing stopping them,” says Leigh Purvis, director of health services research for the AARP Public Policy Institute. 

AARP Membership: Join or Renew for Just $16 a Year

Other countries drive a much harder bargain with drug companies. In contrast, the U.S. allows drug companies to pretty much set their own prices. 

And as we all know, when demand is high for a product, companies often raise prices. That’s exactly the case for many prescription drugs.

Tens of millions of Americans suffer from conditions like high cholesterol, high blood pressure and diabetes, all of which can be treated successfully with prescription medications.

More recently, drugmakers have developed game-changing therapies for a host of serious illnesses, including multiple sclerosis, hepatitis C and several cancers. That means people are living longer lives.

The supply of a newer medicine, however, is controlled entirely by the drug manufacturer that holds the patent rights. That gives the manufacturer a monopoly on the drug for the 20-year life of the patent. During that time, it is free to raise the price as frequently and as much as the market will bear. An example: Last February, the price of Evzio, an auto-injected drug that is used to treat opioid overdose, jumped to over $4,000 — from just $690 in 2014 — just as demand for the medicine was quickly rising. 

You may not realize the high cost of medicine if you’re relatively healthy and have insurance to cover those occasional needs for, say, a week’s course of antibiotics. But if you or someone in your family develops a chronic or serious condition, prepare for sticker shock — even if you have insurance. 

The profits

When Janet Huston was diagnosed with a rare stomach cancer in 2009, surgery seemed to offer a cure. But a year later the cancer — called gastrointestinal stromal tumor or GIST — returned with a vengeance. The 66-year-old retired lawyer is now taking an arsenal of drugs, including Gleevec, to contain her tumor and control its symptoms. But the medicines that allow her to lead “a somewhat normal life” cost her more than $17,000 a year, including about $12,000 for Gleevec.

“That’s about 30 percent of my total income,” says Huston, who lives in Des Moines, Iowa, on Social Security and a modest pension from her years as an attorney. “I don’t always take my medication as I should, especially in the months when income taxes and property taxes come due,” she admits. 

It’s not just people like Huston who suffer financially. “High prescription drug prices affect everyone,” Purvis says. “Even if patients are fortunate enough to have good health care coverage, higher prices translate into higher out-of-pocket costs, premiums and deductibles. And greater spending by taxpayer-funded programs like Medicare and Medicaid are eventually passed along to all Americans in the form of higher taxes, cuts to public programs or both.” 

Put even more simply: One reason that your health insurance rates are high is because you are subsidizing other people’s high-cost medicines. For example, imagine the euphoria if a company developed a breakthrough treatment for Alzheimer’s disease. Let’s say it costs $60,000 a year per patient, and it gets prescribed to every American with the disease. To pay for the medicine,  insurance premiums for each privately insured person in the U.S. would increase by more than $140 per month, based on a new calculator developed by the Biotechnology Innovation Organization. 

The Drug Cost Debate at a glance 2


A Contorted Marketplace

If you needed a new TV, you would do some research, shop around and pick the best model at the price you can afford. That creates competition that pushes prices down. The market for prescription drugs doesn’t work that way. For example, you don’t make the product choice — your health care provider does. And doctors and nurse practitioners often do so in the dark: There’s little information available to compare one drug to another. The Food and Drug Administration (FDA) does not require drug companies to prove that their new products are better than existing products. So many physicians write prescriptions for the drugs they’re most familiar with — and that information often comes from manufacturers themselves. Drug companies spend $24 billion a year marketing to health care professionals. 

Other factors that cause the drug market to be skewed include:

Patent law. Pharmaceutical companies have become adept at coming up with strategies to extend their monopoly on a drug beyond the expiration of its original patent. For example, they can seek approval for a “new” product that is a slight variation on the original, such as extended release formulations, or by creating therapies that combine two existing drugs into one pill. “The longer that a drug company is able to maintain its monopoly, the longer it can continue to charge whatever it wants for its product,” Purvis says.

Limits on Medicare. One of the largest purchasers of prescription drugs, Medicare is blocked by law from negotiating prices. When Congress was debating the law that created Medicare Part D (which took effect in 2006), lobbyists from the pharmaceutical industry convinced legislators that giving Medicare negotiating power would amount to price control. 

Compare Medicare with the Veterans Health Administration (VHA), the part of the Department of Veterans Affairs that handles medical care. The VHA does have the ability to negotiate drug prices. As a result, it pays 80 percent less for brand name drugs than Medicare Part D pays, according to a 2015 report by Carleton University in Ottawa, Ontario, and Public Citizen, a public advocacy group. The VHA gets its negotiating power from its formulary, a list of prescription drugs that it will cover. Medicare and Medicaid, by contrast, are required to cover almost all drugs approved by the FDA, regardless of whether a cheaper, equally effective drug is available.   

Mutiple middlemen. When you pick up a drug at the pharmacy, you often don’t know what its real price is — that is established between the manufacturer and your insurer. You just pay the agreed-upon copay rate. Today, insurance companies rarely negotiate prices directly with drug manufacturers. Instead, most insurers work with pharmacy benefit managers, who negotiate rebates and discounts on the company’s behalf — often in exchange for preferential placement on their list of covered medicines. Pharmacy benefit managers add yet another participant to what is already a complex system.

The Drug Cost Debate at a glance 1


The R&D Explanation

The pharmaceutical industry offers several responses to the charges of excessively high prices. First, it notes that prescription drugs account for just 10 percent of  the nation’s health care costs; by comparison, 32 percent of costs go to hospital care, according to a 2016 report from Medicare.

It also notes that an open market means that “patients in the U.S. can access the most innovative treatments far earlier than any other country,” says Robert Zirkelbach, executive vice president at the Pharmaceutical Research and Manufacturers of America (PhRMA), the industry trade group. For example, data from PhRMA show that patients in Europe wait an average of nearly two years longer to get access to cancer medicines than American patients. 

But the industry’s primary defense of rising medicine prices are the high costs associated with drug development. 

Drug companies spend over 10 years and up to $2.6 billion bringing a drug to market, according to a 2016 Journal of Health Economics article based on research by the Tufts Center for the Study of Drug Development (which gets a minority of its operating funds from the pharmaceutical industry). Of that amount, $1.4 billion is actual costs — items like salaries, labs, clinical-
trial expenses and manufacturing. The remaining $1.2 billion is “capital costs”: what the company sacrifices by investing time and money in an unproven drug. Some experts dispute these numbers, saying they overstate the true costs.

Even after accounting for their research investments, however, drug companies are among the most profitable public businesses in America. And an analysis from the research company Global Data revealed that 9 out of 10 big pharmaceutical companies spend more on marketing than on research. Most of them also have big budgets for lobbyists to ensure the laws continue to work in their favor. The Center for Responsive Politics puts the number of pharmaceutical industry lobbyists at 804 in 2016.

Further, some drug companies are moving away from doing all of their research in-house and instead are buying smaller companies with promising products. About 70 percent of industry sales come from drugs that originated in small companies, up from 30 percent in 1990, according to a Boston Consulting Group survey. 

In addition, drug companies increasingly focus on products that can generate the highest profits. The majority of drugs approved by the FDA are now expensive specialty drugs. Many drug companies are also pursuing “orphan drugs” — medicines targeting diseases that afflict fewer than 200,000 people. These medications cost an average of $140,000 a year. The catch: Many orphan drugs eventually receive additional approvals as a treatment for other conditions, dramatically increasing the market for the drug. 

The government supports orphan drug development with tax breaks and other incentives. In 2016, the pharmaceutical industry netted $1.76 billion in orphan drug tax credits.

“People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent”— Leigh Purvis, director of health services research for the AARP Public Policy Institute

Meanwhile, just five of the top 50 drug companies are spending money on much-needed new antibiotics — largely because these drugs aren’t lucrative, the AARP Bulletin reported in November 2016. “In most cases, people only need to take an antibiotic for a couple of weeks to get rid of an infection. Compare that to medications for chronic conditions — which people go on taking every day for years — and you can understand why drugmakers aren’t particularly interested,” says Erik Gordon, a professor at the University of Michigan Ross School of Business.  

There is nothing illegal with any of this: As publicly owned corporations, pharmaceutical firms focus on their bottom line. “Pharmaceutical executives say they have to be more aggressive to satisfy Wall Street,” says John Rother, executive director of the Campaign for Sustainable Rx Pricing.

But there’s evidence that drug companies will respond if pressured to lower prices. One example is patient-assistance programs. Kristin Agar, a 65-year-old clinical social worker in Little Rock, Ark., was diagnosed with lupus in 2009. Her doctor prescribed Benlysta, the only medication specifically approved for lupus. Her insurer would pay 80 percent, about $2,500 per infusion, but Agar had to pay the remaining $450 per dose.

“I couldn’t afford that,” says the self-employed professional. But when she applied for assistance, she was told she made too much money. “That just infuriated me,” she says. Agar appealed the decision — and got her copay covered by the drugmaker for two years. 

But a consensus is building that more must occur. “People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent,” says AARP’s Purvis. “The trends that we’re seeing are simply unsustainable.”

There is nothing illegal with any of this: As publicly owned corporations, pharmaceutical firms focus on their bottom line. “Pharmaceutical executives say they have to be more aggressive to satisfy Wall Street,” says John Rother, executive director of the Campaign for Sustainable Rx Pricing.

But there’s evidence that drug companies will respond if pressured to lower prices. One example is patient-assistance programs. Kristin Agar, a 65-year-old clinical social worker in Little Rock, Ark., was diagnosed with lupus in 2009. Her doctor prescribed Benlysta, the only medication specifically approved for lupus. Her insurer would pay 80 percent, about $2,500 per infusion, but Agar had to pay the remaining $450 per dose.

“I couldn’t afford that,” says the self-employed professional. But when she applied for assistance, she was told she made too much money. “That just infuriated me,” she says. Agar appealed the decision — and got her copay covered by the drugmaker for two years. 

But a consensus is building that more must occur. “People are concerned about drug prices; more are being forced to make trade-offs between paying for their drugs and for food or rent,” says AARP’s Purvis. “The trends that we’re seeing are simply unsustainable.”

These Common Drugs Increase Risk of Dementia

Disease can occur up to 20 years after exposur

Pills in cups

Incidences of dementia were found up to 20 years after exposure to a class of common drugs called anticholinergics.

En español | A common class of drugs known as anticholinergics, used to treat a number of illnesses such as depression and Parkinson’s disease, may also increase a patient’s risk of dementia by 30 percent, according to a new study published in the British Medical Journal. Anticholinergic drugs are also used to treat gastrointestinal disorders, urinary incontinence, epilepsy and allergies. It is estimated that 20 to 50 percent of Americans 65 and older take at least one anticholinergic medication

The research team analyzed more than 27 million prescriptions, as recorded in the medical records of 40,770 patients ages 65 to 99 who were diagnosed with dementia, and compared them with the records of 283,933 older adults without dementia. The researchers found greater incidences of dementia among patients prescribed anticholinergic antidepressants, urological medications and Parkinson’s disease medications than among older adults who were not prescribed these drugs. These incidences of dementia were found up to 20 years after exposure to the drugs. It was noted that anticholinergic drugs used for gastrointestinal and cardiovascular issues such as asthma are not associated with later incidences of dementia.   

“Many people use anticholinergic drugs at some point in their lives, and many are prescribed to manage chronic conditions leading to potentially long exposures,” researchers stated. “Clinicians should continue to be vigilant with respect to the use of anticholinergic drugs and should consider the risk of long-term cognitive effects, as well as short-term effects, associated with specific drug classes when performing their risk-benefit analysis.”

Heart Association Raises Its Blood Pressure Guideline

46 percent of U.S. adults are now considered to have hypertension

by William E. Gibson, AARP, November 14, 2017 | Comments: 9

Blood Pressure Standard


The AHA’s new guideline is designed to encourage people to take earlier steps to control their blood pressure.

Under a newly released scientific guideline, nearly half of American adults could be considered at risk of major health problems because of high blood pressure, the American Heart Association reported on Monday.

Blood pressure readings of 130 as the top number or 80 as the bottom number now are considered to be high. High readings had been defined as 140/90.

Applying the new standard, 46 percent of American adults have high blood pressure, far more than the 32 percent under the previous definition. A reading of less than 120/80 still will be considered normal, but levels at or above that will be classified as “elevated.”

The AHA’s new guideline is designed to encourage people to take earlier steps to control their blood pressure, a major risk factor for heart disease and stroke, the leading causes of death.

“Yes, we will label more people hypertensive and give more medication, but we will save lives and money by preventing more strokes, cardiovascular events and kidney failure,” said Kenneth Jamerson, professor of internal medicine and a hypertension specialist at the University of Michigan Health System. He is among 21 experts on the guideline-writing committee, the AHA said.

“If you are going to put money into the health care system,” Jamerson said, “it’s to everyone’s advantage if we treat and prevent on this side of it, in early treatment.”

Congress… keep the Senior People 1st!

Americans oppose efforts to increase prescription drug costs for seniors

Man looking at pills


En español | The giant pharmaceutical lobby is pressing Congress to roll back a recent budget deal provision that gives some financial relief to millions of Medicare beneficiaries with high prescription drug costs.

The deal that federal lawmakers passed in February is supposed to help lower prescription drug costs for older Americans by requiring that brand-name drug companies pick up more of the cost of their medicines for beneficiaries who are in the Part D “donut hole.”

Medicare Part D enrollees find themselves in the donut hole when their total spending on medicines reaches a certain threshold, which had been set at $3,820 for 2019. Once a beneficiary reaches that limit, he or she enters the donut hole, where they pay 25 percent of costs for brand-name drugs and 37 percent of the cost of generics. Beneficiaries continue to pay this share until their out-of-pocket spending reaches $5,100. Once they hit that limit, they exit the coverage gap and enter catastrophic coverage, where they pay no more than 5 percent of their drug costs for the rest of the year.

The coverage gap was scheduled to close in 2020, but under the bipartisan budget deal, that is supposed to happen in 2019. In addition, Congress required brand-name drug manufacturers to pay more of the cost of their medicines for beneficiaries in the donut hole. Currently, these drugmakers pay 50 percent of the cost of their brand-name drugs for enrollees in the gap. Under the budget law, starting in 2019 they are supposed to pay 70 percent. The higher discounts would help lower drug costs for seniors, reducing the amount they have to pay out of pocket to reach catastrophic coverage.

The pharmaceutical industry has been trying to overturn the agreement since it was passed and has been lobbying lawmakers in both parties. A recent ad from the drug lobby claims the budget deal “threatens” Medicare’s “successful competitive structure.”

But AARP and other advocates for affordable drug prices say the Pharmaceutical Research and Manufacturers of America (PhRMA) is trying to get Congress to overturn the donut hole deal for increased profit.

“Big drug companies want to boost their profits by raising Medicare drug costs,” says Nancy LeaMond, AARP executive vice president and chief advocacy and engagement officer. “Seniors have worked hard and paid into Medicare their whole lives. It would be shameful to raise their costs when so many are struggling.” This is yet another way, AARP officials say, that drug companies want to increase profits while forcing American consumers to continue paying the highest drug prices in the world.

The pharmaceutical industry is now targeting the lame duck session of Congress in its efforts to break the donut hole deal. Lawmakers have to pass a budget bill by Dec. 7 to prevent a partial shutdown of the federal government. A spokesman for House Democratic leader Nancy Pelosi told Axios, “Republicans are just desperate to get their multibillion-dollar giveaway to Big Pharma done before a Democratic majority takes over the House” in January.

AARP members across the country are reaching out to Congress and the president to demand that they stand by the donut hole deal and their constituents. In last week’s midterm elections, 56 percent of those who voted were over age 50. Throughout the campaign, health care  — especially the cost of prescription drugs — was cited as a key concern among those voters