Fixing rising pharmaceutical drug costs once and for all

Published in RI News Today on September 27, 2021

Just days ago, WBUR.org, Boston’s NPR News Station, featuring NPR News and Programs, aired a 45.37 minute program, “Steps to Fix America’s Broken Prescription Drug System,”  clearly illustrating the need to fix America’s ailing prescription drug program.  While Americans are traveling to Mexico in search of affordable prescription drugs, referred to as “Pharmaceutical Tourism,” the NPR program added a new twist. Now some state insurance companies are sending their beneficiaries to Mexico to purchase cheaper their pharmaceuticals manufactured in the United States at a lower price, on their tab.  

For instance, let’s take a look at Ann Lovell, of  Salt Lake City, Utah. The NPR Program, aired on Sept. 24, 2021, introduced us to the hearing-impaired former teacher who worked at an early-intervention program for deaf students that’s part of the Utah Schools for the Deaf and Blind, who traveled from Utah to Mexico five times to purchase Enbrel, to treat rheumatoid arthritis, with travel costs and a $500 cash incentive paid by her insurer, the Public Employees Health Program (PEHP). 

Lovell’s Utah physician writes her a prescription, and each tie she travels to Mexico she sees a physician at the Tijuana-based hospital as well.  She updates the physician on her medical condition, gets her prescription, and takes it to the pharmacist, who gives her the medication. 

NPR’s program noted that the Utah initiative was created under a 2018 state law, “Right to Buy,” by Republican Congressman Norm Thurston.  PEHP offers it only for people who use a drug on a list of about a dozen medications were the state can see significant savings.  Of the 150,000 state and local public employees covered by the insurer, fewer than 400 are eligible to participate.

Responding to a tweet promoting the offer, Levell quickly enrolled for as they say an offer she could not refuse.  She and a companion would travel on an all-expenses paid trip from Utah to Tijuana, Mexico to pick buy her pharmaceuticals at a steep discount paid for by the state of Utah’s public insurer to slash the high cost of prescription drugs. PEHP would only have to pay half of the cost of Embrel versus if Levell got it in the United States, saving tens of thousands of dollars. The annual U.S. list price for the drug, Enbrel, is over $62,000 per patient. 

It was one long, exhausting travel day.  At 5:00 a.m., Lovell and her friend flew from Salt Lake City to San Diego.  There, an escort picked them up and took them across the boarder to a Tijuana hospital, where she got a refill on her prescription.  After that, they were shuttled back to the airport and arrived back home by midnight. 

Lovell said she initially began paying $50 a month for her pharmaceutical, increasing to $450 in co-pays.  It would have increased up to $2,500 if she hadn’t started traveling to Mexico.  Without the program, she would not be able to afford the medicine she needed

With the COVID-19 pandemic closing the borders, PEHP’s “Pharmaceutical Tourism” initiative came to an end with the borders closing.   Lovell’s insurer came up with a new option of getting Enbrel at lower cost.  That’s when Lovell was told about the drug manufacturer’s coo-pay program where she would only have to pay five dollars a month.  

Calls for Medicare Negotiating the Cost of Pharmaceuticals 

Although traveling to Mexico or Canada to purchase more affordable pharmaceuticals is a temporary fix, the Washington, DC-based AARP calls for a permanent solution.  The national AARP advocacy group has launched a $4 million ad buy calling Medicare to step in to lowering the spiraling costs of pharmaceuticals.  

The Washington, DC-AARP noted that a recent AARP survey of voters found that 80% agreed or strongly agreed that drug prices could be lowered without harming innovation of new medicines. Strong majorities of voters, regardless of political affiliation, want Congress to act on the issue this year, with 70% saying it is very important. The survey also found that 87% of voters support allowing Medicare to negotiate prescription drug prices. 

AARP’s full-scale ad campaign blitz, including a $4 million ad buy, pushing back on false claims from the pharmaceutical industry that reforms would limit Americans’ access to medicines. AARP has called for fair drug prices for years and is urging Congress to pass legislation that would allow Medicare to negotiate drug prices, put a cap on out-of-pocket costs that older adults pay for their prescription drugs and impose penalties on drug companies that raise prices faster than the rate of inflation.

AARP’s new national ad campaign points out that Americans’ tax dollars subsidize new drug development even as Big Pharma charges Americans dramatically higher drug prices. The ad goes on to urge Congress to “stop the Big Pharma scam. Let Medicare negotiate drug prices.” Beginning tomorrow, it will air nationally on MSNBC and CNN; and in the DC metro area on the Sunday political shows and local radio stations, as well as on digital platforms including the New York Times, Washington Post, CNN, and Politico. In addition to paid advertising, AARP members began taking part in grassroots action beginning September 20. A social media campaign calling for older adults to #ShowYourReceipts has led thousands to share their monthly medication costs with AARP, with their monthly “bills” now running over $11 million.

“Americans are fed up with paying the highest prices in the world for prescription drugs,” said Nancy LeaMond, AARP Executive Vice President and Chief Advocacy & Engagement Officer in a Sept. 17, 2021 statement announcing this advertising campaign. “Our 38 million members are watching and they are counting on their members of Congress to do what’s right and vote to let Medicare negotiate for lower drug prices.”

Now, Congress Must Act…

Congress is currently debating measures to rein in the cost of prescription drugs, and the House Ways & Means Committee advanced legislation this week that includes many of AARP’s priorities on fair drug prices.

AARP concerned for working caregivers. Advice from Dr. Michael Fine

Published in RINewsToday on August 9, 2021

After the coronavirus (COVID-19) pandemic initially shuttered the nation’s businesses over a year ago and with Delta variant cases now surging among the 50 percent of the population not fully vaccinated, AARP releases a 17-page report exploring the concerns of working caregivers about returning to pre-pandemic business routines. 

AARP’s national survey, examining caregiver concerns during the COVID-19 pandemic, was conducted by phone and online panel on July 1-7, 2021, and included 800 U.S. residents 18 years or older who are currently providing unpaid care to an adult relative or friend and employed either full-time or part-time (but not self-employed).

Six in ten caregivers responding to the survey were paid hourly, while nearly four in ten are salaried workers. Almost seven in ten say that their job is “essential.” 

The researchers found that the COVID-19 pandemic impacted how working caregivers balanced their work and caregiving roles. Four in five caregivers expressed feeling stressed by juggling these dual responsibilities. More than three in five of the respondents say that they were spending more time caring for their loved one(s). When asked about the next 12 months, two-thirds of all working caregivers expect some, or a great deal of, difficulty balancing both job and caregiving roles. 

According to the AARP study, “Working Caregivers’ and Desires in a Post-Pandemic Workplace,” about half of working family caregivers were offered new benefits during the pandemic, including flexible hours (65%), paid leave (34%) and mental health or self-care resources (37%). About half of those surveyed were able to telework due to COVID 19; by early July, 22% were still working from home full time and 30% were working from home at least part-time. For those who could work from home, nearly nine in 10 said it helped them balance work and care responsibilities – and 75% are worried about how they will manage when their pre-pandemic schedules resume.

“Employers would be wise to consider how benefits like paid leave and flexible hours can help the one in six workers who are also caring for a loved one,” said Alison Bryant, Senior Vice President, AARP Research in an Aug. 4 statement released announcing the release of the report. “Living through the pandemic was challenging for working family caregivers – while some were helped by new workplace benefits and flexibility, the vast majority are worried about how to balance both roles going forward. Our research opens a window into how the pandemic changed the workplace and what working caregivers are concerned about in the coming year,” says Bryant.

As offices and other in-person workplaces begin to slowly re-open, many caregivers expressed concerns that they would bring the virus home to infect loved ones (63%) or contract COVID at work (53%). About three in five are worried about leaving the person they care for alone while they go to work. Among those who were able to work at home during the pandemic, almost nine in ten would like the option to continue doing so at least some of the time. And more than four in ten caregivers said they would consider looking for a new job if the benefits they were offered during the pandemic were rolled back.

AARP offers a range of free tools and resources to help employers retain working caregivers, including tip sheets, tool kits and online training for managers. The resources are available at www.aarp.org/employercaregivin

Dr. Michael FineThe pandemic of the unvaccinated

Don’t let your guard down, even if you’re vaccinated, warns Dr. Michael Fine, the former Rhode Island Director of the Department of Health. As the COVID-19 Delta variant cases spike across the nation, “it’s the pandemic of the unvaccinated,” he says. “Now 97% of the hospitalized are unvaccinated. As community transmission rises, it is more likely that vaccinated people will get infected and spread the virus,” he says.

Dr. Fine further responded to requests about how we should approach this latest wave of COVID in Rhode Island:

“For most vaccinated people, Covid-19 will be a mild disease,” says Fine.  For those with chronic disease like high blood pressure, diabetes, heart disease, COPD and cancer, one study from Israel suggests that the risk of hospitalization and death is equal to the unvaccinated,” he says.  

“As community transition rises, I’m expecting some hospitalizations and death in vaccinated people with chronic disease. That group would do well to self-isolate — to stay home and let others shop for them, until community transmission falls to less than 35/100,000/week. We are now a place with high transmission, about 140/100,000/week,” states Fine.

Fine urges businesses to require all employees working together to be vaccinated, wear masks and get weekly Polymerase Chain Reaction (PCR) tests for the COVID-19 virus.

Teleconferencing technology should replace onsite or outside meetings, he says.  

Working caregivers can be protected from bringing COVID-19 home by being vaccinated and should get two PCR tests a week, and limit contact with other people by avoiding shopping at stores or going to restaurants.

AARP launches campaign to support Family Caregivers

Published in RINewsToday on July 5, 2021

With caregiving costs skyrocketing, and with caregivers now estimated to be spending $7,242 annually out-of-pocket, AARP launches a national campaign to push for passage of the Credit for Caring Act.

The Washington, DC-based aging advocacy group has endorsed the bipartisan legislative proposal that would provide up to a $5,000 nonrefundable federal tax credit for eligible working family caregivers. The caregiver bill was introduced on May 18th  in the Senate by Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and in the House by Representative Linda Sánchez (D-CA).

According to the National Alliance for Caregiving and AARP’s Caregiving in the U.S. 2020 study, there are an estimated 48 million Americans who provide care to either an adult or child with special needs at some time in the past 12 months. The study showed an increase of about 8 million caregivers from 2015 to 2020, indicating a significant growth in the nation’s caregivers’ population.

A 2019 AARP Public Policy Institute report noted that family caregivers in the United States provide $470 billion in uncompensated care.

Calling for Congressional Action to Assist Caregivers

AARP’s national campaign, urging passage of the Credit for Caring Act and more support for family caregivers, involves significant grassroots advocacy, including at least 60 tele-town halls, a major digital and video advertising initiative, and social media outreach through AARP’s national and state offices. Already, more than 100,000 contacts have been made with Members. In addition, more than 110 organizations, including 36 military and veterans service and support organizations, have joined AARP in asking Congress to pass the act. 

“This research reflects the incredible strain and sacrifices our 48 million family caregivers face every day. They are the backbone of our long-term care system, yet their backs are breaking from a lack of support,” said Nancy A. LeaMond, AARP Executive vice president and Chief Advocacy Officer in a June 29th statement announcing the kick-off of its new national grassroots campaign and also the release of its newest caregiver study, “AARP’s Caregiving Out- of-Pocket Costs Study.”

Adds AARP Rhode Island State Director Catherine Taylor: “This research reflects the incredible strain and sacrifices the 136,000 family caregivers in Rhode Island face every day. They are the backbone of our long-term care system, yet their backs are breaking,” 

“AARP research shows family caregivers contribute 114 million hours each year in their vital roles, “Taylor noted.

“We hear from so many caregivers from across the state who struggle financially,” Taylor added. “It is heartbreaking to know that cost, along with stress, fatigue and other factors take their toll over time. The need for support is more than evident.”

The Cost of Caregiving

Last month, AARP released its caregiver study, putting a spotlight on the out-of-pocket costs of caregiving, taking a close look at the financial strains on family caregivers and financial sacrifices (uncompensated care) they make in providing assistance to their loved ones. The study is a five year follow up to the landmark 2016 out-of- pocket caregiving study.

According to newly released study, nearly 8 in 10 of those caring for an adult family member (78%) are facing regular out-of-pocket costs, with the highest burden falling on younger caregivers and those who are Hispanic/Latino or African American. AARP researchers tracked what caregivers pay for using their own money and found average annual spending totaled $7,242 and, on average, 26% of the caregiver’s income. Housing expenses like rent or mortgage payments, home modifications, and assisted living made up more than half of caregivers’ spending, followed by medical expenses at 17%.

Out-of-pocket spending is much greater for some groups of caregivers, either in total dollars spent or as a percentage of average household income.

The researchers say that working caregivers who reported two work-related strains from caregiving, such as taking time off or working more hours, spend $10,525 each year on average – twice as much as caregivers who report one or no work-related strains.

AARP’s caregiver study also examined how caregiving financially impact between different generations of caregivers. Gen X caregivers spent the most money at $8,502. However, Gen Z and Millennial caregivers reported the greatest financial strain (spending on average $7,462 per year), spending a larger share of their household income. These caregivers have less time in the workforce to build financial security.

The AARP study found that Hispanic/Latino and African American caregivers also reported greater financial strain than White or Asian American caregivers. Hispanic/Latino caregivers spent on average, 47% of their household income on caregiving, and expenses for African American caregivers totaled, on average, 34% of income.

Researchers also found that caregivers caring for someone with Alzheimer’s disease/dementia or mental health issues tend to spend more ($8,978 per year and $8,384 per year, respectively) than those caring for someone without those conditions.

Work-related or personal strain as a result of caregiving can impact the caregiver’s long term financial security, too, say the researchers.  Nearly 47% of caregivers have experienced at least one setback as a result of being a caregiver. These setbacks include dipping into personal savings, cutting back on their own spending, and reducing how much they save for their retirement years.

More than 53% have experienced at least one work-related impact as the result of caregiving. Taking time off (both paid or unpaid) and working different hours are ways that caregiving impacts work. 

In addition to direct out-of-pocket spending, caregivers are also experiencing indirect financial setbacks. Nearly half of family caregivers (47%) experienced at least one financial setback such as having to cut back on their own health care spending, dip into their personal savings or reduce how much they save for their retirement.

Send your letters to Congress urging passage of the bipartisan Credit for Caring Act.  With an aging society and the number of caregivers increasing, a $5,000 nonrefundable federal tax credit for eligible working family caregivers might just help to pay the mounting costs of caregiving expenses. 

For more details about AARP’s caregiver study, go to:  https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2021/family-caregivers-cost-survey-2021.doi.10.26419-2Fres.00473.001.pdf.

More resources for family caregivers, including a free financial workbook, are available at aarp.org/caregiving.