The crafting of Rhode Island’s first State Plan on Caregiving

Published on February 28, 2022 in Rhode Island News Today

Rhode Island has the distinction of having one of the highest percentages of adults aged 85 and over in the country. In 2017, out of a population of 1,060,00 there are more than 136,000 caregivers providing 114 million hours of care, says AARP Rhode Island.  More Rhode Islanders will be thrust into caregiving roles in the coming years.

In response to the continued aging of Rhode Island’s population, the Rhode Island Office of Healthy Aging (OHA) and Family Caregiver Alliance of Rhode Island officially released Rhode Island’s first State Plan on Caregiving.  The state’s new Plan for Caregivers serves as the framework for the crafting and implementation of new policies, as well as the expansion of various existing programs and partnerships to assist caregivers. The Plan serves to strengthen and advance the shared mission of OHA and the Family Caregiver Alliance of Rhode Island at the United Way (FCARI)  to promote choice, independence, empowerment, and the overall well-being of older adults, individuals with disabilities, and their caregivers.  FCARI is supported with funds from OHA.

As an advocate for caregivers throughout the state, The FCARI serves as the administrator of the 29-page Plan which extends through Sept. 2023. 

A Call for Supporting Rhode Island’s Caregivers

“The COVID-19 crisis has exacerbated many of the challenges faced by our older adults and their caregivers, particularly social isolation,” said Interim Director Michelle Szylin announcing the release of this report on Sept 24, 2021. “Caregivers have a tough job and often receive little support. Through the development of this State Plan, we’re showing our commitment to strengthening resources available for our caregivers and better supporting the important work they do across our state,” she says.

Adds Maryam Attarpour, Program Manager, Family Caregiver Alliance of Rhode Island at the UWRI, “Caregiving has been and will always be a major part of the fabric of our society.” Attarpour says that the new State plan puts the needs of family caregivers first. “Our goal is to create a state that is equitable, inclusive, and supportive of our family caregivers, and the loved-ones they care for,” she says.

According to the statement, the State Plan on Caregiving also builds on the state’s existing efforts to meet the needs of Rhode Island caregivers of any age.  It provides an overview of the existing support network available for family caregivers to access as well as addresses the work that remains to ensure equitable access to resources and advocacy. 

One of the key areas of support that the plan focuses on is developing a comprehensive, robust website and social media presence for FCARI that will serve as a hub of information for resources and information for caregivers. It will also ensure diversity, equity, and inclusion for Rhode Island Caregivers and those for whom they care, too.

The State Plan will also ensure that the caregivers of Rhode Island seeking long term services and supports are identified and provided with information assistance and advance  opportunities for digital access (iPads, notebooks, computers and phones) to better serve and support Rhode Island Caregivers.

Over the years, the Rhode Island General Assembly has worked closely with aging advocates to enhance supports and resources for the state’s caregivers.  The State Plan calls on lawmakers to review existing laws to determine if they need to be refined or better funded.  It also suggests that legislation that has been submitted and not passed as well as laws and policies from other states be reviewed for “relevancy for supporting Rhode Island family caregivers.

Putting a Face on Family Caregivers

On Feb. 15th, Maureen Maigret, Chair of the state’s Long-Term Care Coordinating Council’s Aging in Community Subcommittee, told members of the Rhode Island House Oversight Subcommittee on Aging & Senior Services, the importance of hammering out sound policy to support the state’s growing number of caregivers.

Maigret painted a picture of the typical care recipient, citing the 2020 Report, Caregiving in the U.S., to the attending House lawmakers. “Eighty nine percent of the care recipients are a relative, with 50% being either a parent or parent-in-law, spouse/partner (12%), grandparent/grandparent-in-law (8%), sibling/sibling-in-law (7%), adult child (6%) or nonrelative (10%), she said, noting that the average care recipient’s age is 68.9.

While 61% of the caregivers are women, 39% are men, adds Maigret, noting that 61% are white, 14% African American and 17% Hispanic.  The age of most caregivers falls between ages 60-65, says Maigret, noting that younger adults also find themselves having to provide caregiving chores.  Twenty-four percent of persons ages 18-34 and 23% of person’s ages 35-49.

It’s not easy to be a caregiver, says Maigret. She warned that caregivers should be considered “the hidden patient” because they are at risk for becoming depressed, extremely fatigued, stressed, feeling overwhelmed, being socially isolated, losing income and having physical health problems.

Maigret’s presentation was followed by a panel led by Acting OHA Director, Michelle Szylin, and her staff who provided information on programs OHA offers to assist caregivers including subsidized respite, home care and adult day services and special pilots to support those caring persons with Alzheimer’s disease.

“Although our legislature and Governor have been supportive of funding programs to support caregivers, the growth of our older population means more persons will need to become caregivers,” said Maigret. “We need better state programs and services to provide physical, emotional and financial support, and enhanced access to information about available resources,” she said.

Maigret adds: “There is also an urgent need to address the direct care worker crisis by providing the workers with fair and competitive wages.  Many caregivers need to supplement the services they provide with paid caregivers if they are in the workforce, or need to take care of other family needs. Yet due to the low wages paid for personal care workers, it is not always possible to find such help.”

For a copy of the State Plan on Caregiving go to https://fcari.org/state-plan-on-caregiving/

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.