Tag Archives for Kathleen Connell

Caregivers Find it Difficult to Shop at Retail Stores

Published in the Woonsocket Call on September 22, 2019

Survey findings from a recently released national study, by the Washington, DC-based AARP and NORC at the University of Chicago, will send a strong message to America’s businesses.

With the graying of America, retail stores must change the way they do business in order to attract customers who provide unpaid family caregiving to their loved ones.

The study, “Family Caregiver Retail Preferences and Challenges,” and its survey findings were presented at the AARP Executive Summit, The Price of Caring, on September 10 in Washington, D.C. The summit’s mission was to highlight public- and private-sector solutions to support Americans who care for an older or ill loved one.

In-store Shopping is a Struggle

While juggling a multitude of caregiving tasks, caregivers say a lack of accommodations for their frail family members is a problem for shopping at retail stores. The study’s findings reveal that in-store shopping is a struggle for one-third of the nation’s 40 million unpaid family caregivers. Many leave their loved ones at home or choose to shop online, despite strongly preferring the in-store experience.

A whopping 93 percent of caregivers surveyed say they shop for the person they care for. Among these caregivers, most report shopping monthly for groceries (87 percent), basic household items (65 percent), toiletries (61 percent), prescription drugs (58 percent) and other health products (52 percent for persons they regularly care for.

“Americans who take care of loved ones are often strapped for time, and many face logistical challenges doing something as simple as going to the grocery store,” said Nancy LeaMond, AARP executive vice president and chief advocacy & engagement officer, in a September 10th statement announcing the study’s findings. “Retailers can score big with caregivers if they make it easier for them to bring their loved ones along when they shop,” says LeaMond.

The AARP survey findings detail simple but important changes retailers should consider to enhance the shopping experience of caregivers. Businesses can provide dedicated parking spots and ample comfortable reserved seating for older shoppers to rest, wider aisles that easily accommodate both wheelchairs and shopping carts, longer store hours, and train their staff to specifically work with caregivers.

The Pros and Cons of In-Store and On-Line Shopping

The survey findings in the 26-page study reveal that 82 percent of the caregiver respondents prefer to shop in-store because of the ability to touch the products and they don’t have to wait for a product’s delivery or pay for shipping charges. But 84 percent say they shop online for ease and convenience, despite preferring an in-store experience. Forty three percent of the respondents say a major reason they leave their loved one at home when shopping is because the store environment is too difficult for the recipients of their care.

More than 56 percent of the caregiver respondents say that when shopping on behalf of their loved ones they spend at least $50 per month. Forty one percent note they spend more than $250 or more a month when shopping for a loved one.

Businesses Must Listen to the Shopping Needs of Caregivers

We listen to a lot of caregivers and it seems clear that, regardless of the challenge, the help they want most is for somehow to find a convenient, time-efficient and accommodating means of getting what they need, when they need it,” said Rhode Island AARP State Director Kathleen Connell. “In retailing, convenience is a huge competitive advantage these days. But there are aspects of convenience that – for caregivers – go beyond finding what you need on Amazon and having it delivered the next day or two,” says Connell.

“Some caregiver needs are in the ASAP category and they head for brick and mortar retail establishments. Shopping for food and clothes, picking up a prescription or medical supplies, even simple things such as picking up dry cleaning feel like ‘emergencies’ because time is so. Imagine this in the context of being with someone in a walker or wheelchair,” notes Connell.

Connell urges retailers to take this report to heart. “There is an incredible amount of goodwill to be earned if you think about caregivers, as well as those in their care, and give them the consideration that makes their tasks a little easier.”

The AARP survey was conducted by NORC at the University of Chicago and is based on a nationally representative survey of 1,127 Americans who provide unpaid care for an adult age 18 or older. The survey was funded by AARP and used AmeriSpeak®, the probability-based panel of NORC at the University of Chicago. Interviews were conducted between Aug. 1-19, 2019, online and using landlines and cell phones. The overall margin of sampling error is +/- 4.1 percentage points at the 95% confidence level, including the design effect. The margin of sampling error may be higher for subgroups.

To read the full report, visit: http://www.aarp.org/caregivershopping.

For more details about AARP’s Caregiver Shopping study, contact Laura Skufca, AARP Research, Lskufca@aarp.org.

Putting the Brakes on Skyrocketing Prescription Drug Costs

Published in the Woonsocket Call on August 25, 2019

A few days ago, AARP Rhode Island released new state specific data detailing the impact of high prescription drug prices for Ocean State residents, specifically those living with cancer, prediabetes or diabetes, and heart disease. The Washington-based AARP unveiled the infographic at the National Academy for State Health Policy (NASHP) annual conference as part of AARP’s nationwide Stop Rx Greed campaign to lower drug prices for all Americans.

“While prescription drug prices continue skyrocketing, Americans are being forced to choose between filling life-saving medications or paying rent and buying food,” said AARP State Director Kathleen Connell in an August 21 statement announcing the release of the drug cost data. “So far in 2019, 29 states have passed 46 new laws to rein in drug prices. It’s critical that state and federal lawmakers continue this momentum to stop Rx greed.” says Connell.

Across the nation, 28 percent of consumers ages 19 to 64, say they are being forced to choose between filling costly life-saving prescriptions and paying their rent, buying food and affording other critical essentials, according to AARP research. In 2016, 25 percent of Rhode Islanders stopped taking a prescription drug prescribed by their health care provider due to cost.

The AARP Rhode Island-specific Infographic zeros in on three commonly used prescriptions to treat cancer, diabetes and heart disease to detail the spiraling increases in drug costs.

Between 2012 and 2017, the retail price of Revlimid, used to treat cancer, increased from $147,413 per year to $247,496 per year. In Rhode Island, 112,403 people are living with cancer.

Lantus, a form of insulin used to treat diabetes, increased from $2,907 per year to $4,702 per year. There are 82,318 people with diabetes in Rhode Island.

Finally, Aggrenox, a heart disease medication, increased from $3,030 per year to $5,930 per year. In Rhode Island, 31, 756 people have heart disease.

Specialty Drug Prices Continue 12-Year Surge

The AARP-state specific infographic released this month follows on the heels of an earlier AARP Public Policy Institute report released in June, reporting that the prices of widely used specialty prescription drugs grew more than three times faster than general inflation in 2017.

The researchers found that the average annual price for a single specialty drug used on a chronic basis is now nearly $79,000, compared to $27,824 in 2006.

Specialty drugs often require special administration and handling and are used to treat conditions that often affect older populations, including cancer, rheumatoid arthritis, and multiple sclerosis.

According to the findings of the AARP report, the average annual cost for a single specialty drug was almost $20,000 more than the median U.S. household income ($60,336), more than three times the median income for beneficiaries ($26,200, and over four-and-a-half times higher than the average Social Security retirement benefit ($26,200).

The report also found that the average annual p rice for one specialty medication would have been $29,843 in 2017 – almost $50,000 lower – if the retail price changes for these products had been limited to general inflation between 2006 and 2017.

“Prescription drugs are not affordable when their prices exceed the patient’s entire income,” said Debra Whitman, AARP’s Executive Vice President and Chief Public Policy Officer. Unfortunately, drug prices seem to be in a never-ending race to the top, leaving more and more people unable to afford the medications they need,” she says.

The researchers also noted that revlimid, used to treat cancer, had the highest annual price surge of the 30 top selling specialty drugs at 21.4 percent, going from $203,928 in 2016 to $247,497 in 2017. Revatio, a pulmonary hypertension medication, had the single highest retail price increase (48 percent) among the 97 most widely used specialty drugs.

“Specialty drugs account for the majority of the prescription drugs that were approved by the FDA in recent years,” said Leigh Purvis, Director of Research at AARP Policy Institute. “Given the remarkably high prices associated with such products, it is imperative that policymakers finally enact meaningful changes that target drug manufacturers’ pricing behavior,” she said.

Putting the Brakes to Skyrocketing Drug Costs

Last March, AARP launched its ‘Stop Rx Greed Campaign’ to find Federal and State solutions to slash skyrocketing drug prices. The goal of AARP’s sustained campaign is to help drive down drug prices for all Americans by advocating for a variety of legislative, executive, and regulatory actions at both the federal and state level.

“Americans are paying the highest prescription drug prices in the world,” said Executive Vice President and Chief Advocacy & Engagement Officer Nancy LeaMond, in a statement kicking off this advocacy initiative. “It’s time for pharmaceutical companies to stop deflecting blame and acknowledge that the root cause is the price they set for their products,” she says.

The Stop Rx Greed campaign will include national television, radio and digital ads, editorial content, emails to members, social media posts, ongoing advocacy and grassroots activity in D.C. and the states, and a petition calling on Congress and the Administration to take action now.

As part of the campaign, AARP is actively supporting a number of policy solutions at the national and state level to help lower drug prices. The aging advocacy group supports allowing Medicare to negotiate for lower prescription drug prices and states to negotiate lower prices with drug companies. AARP also calls for giving state Attorneys General authority to crack down on outrageous price increases and clamping down on pay-for-delay and other loopholes that keep
lower cost generic drugs off the market. Finally, AARP endorses capping prescription drug out-of-pocket costs and preserving state pharmacy assistance programs.

Congress is now considering legislation to put the brakes on rising pharmaceutical calls. As the 2020 election approaches the GOP-controlled Senate must work across the aisle with Senate Democrats to craft and pass bipartisan legislation to lower drug costs. It’s time for Senate Majority Leader Mitch McConnell, who vows to block any Democratic priories coming out of the Democratic-controlled Houses to the Senate, to put Senate companion bills on the floor for a vote. It’s time for the Kentucky Senator to put the needs of older Americans first, rather than political wins.

For more details about AARP’s Stop Rx Greed initiative, go to http://www.aarp.org/politics-society/advocacy/prescription-drugs/.

McKee to Unveil Updated State Alzheimer’s Plan

Published in Woonsocket Call on February 10, 2019

Seven months ago with the hiring of Michael Splaine and Kate Gordon of Splaine Consulting, a nationally recognized health policy firm that has provided content matter expertise to over two dozen state Alzheimer’s plans, Lt. Governor Daniel J. McKee, who serves as chair of the state’s Long-Term Care Coordinating Council, rolled up his sleeves to begin his legislative charge to update the 2013 state Alzheimer’s plan.

The hiring of the Columbia, Maryland-based consultants was made possible by two grants totaling $30,000 given by the Tufts Health Plan Foundation and Rhode Island Foundation. When announcing the successful fundraising effort to raise those monies, McKee observed, “Each day, we make great strides in expanding clinical trials and innovating treatments. Over the last few years alone, the local landscape of prevention and treatment has changed dramatically and positively.”

“The updated plan will be an invaluable tool for local leaders, researchers, physicians, advocates and families as we work together to build the momentum in the fight against Alzheimer’s,” says McKee, noting that it is one of the most challenging public health issues facing Rhode Island today. “With the number of affected Rhode Islanders projected to rise to 27,000 by 2025, elected leaders, advocates, caregivers, clinicians and researchers must come together to take unified, targeted action,” he says.

The compilation of the plan is the result of collaboration between McKee, the Alzheimer’s Association Rhode Island Chapter and the state’s Division of Elderly Affairs (DEA). In 2012, the General Assembly directed the Long-Term Care Coordinating Council to serve as the organizational umbrella for a work group that would oversee the development of the plan. In 2013, the state’s five-year Alzheimer’s plan was published. Last year, efforts to update it began.

Last July under the leadership of McKee, Splaine and Gordon worked closely with the Alzheimer’s Association Rhode Island Chapter, DEA, researchers, advocates, clinicians and caregivers sitting on the Lieutenant Governor’s Executive Board on Alzheimer’s,to develop a community-focused strategy for the 2019 State Plan on Alzheimer’s disease and Related Disorders. Over a six-week period, that group held 23 town hall meetings, conducted 45 expert interviews and surveyed (in both England and Spanish) more than Rhode Islanders impacted by Alzheimer’s.

The Official Release…

On Feb. 26 at a press conference in the State Library at 3:30 p.m., McKee will join Sen. Cynthia A. Coyne (D-Barrington) to officially unveil the plan, Rhode Island’s official roadmap to combat the growing Alzheimer’s epidemic. Coyne will announce the introduction of a Senate resolution on behalf of McKee to officially adopt the plan. (House staff are still reviewing the updated plan. There is no House sponsor at this time)

Coyne’s resolution follows her introduction of legislation to create a Rhode Island program to address Alzheimer’s disease within the Department of Health (DOH). The bill would also create an advisory panel to review and make recommendations to improve the state policies, research and care.

Once the Rhode Island General Assembly approves the plan, the Long-Term Care Coordinating Council’s executive board will seek legislative and regulatory changes to carry out its bold set of recommendations for improving supports to those afflicted by Alzheimer’s and other dementias. More than 30 recommendations are detailed in the 35-page plan, which calls for the implementation of three main recommendations.
In order to keep the plan from sitting on a dusty bureaucrat’s bookshelf, the first recommendation calls for the creation of one director-level position within DOH to assist in the coordination of its recommendations. The second urges promoting Alzheimer’s disease and related dementia research opportunities of all types, including federal opportunities to a broad group of Ocean State researchers. Finally, the third calls for the inclusion of brain health in existing publicly-funded promotion and chronic disease management activities.
Many of the recommendation can be easily implemented without additional state funding or legislative approval, says McKee. But, for those that may require state funding, he plans to make it a priority to lobby for those monies.

Taking a Close Look

Maureen Maigret, co-chair, state’s Long-Term Care Coordinating Council, says, “It is terrific to have the plan update completed as it provides direction to our state government leaders and other persons in key positions to proceed with implementation of the recommendations, which can have such far-reaching impacts on the many thousands of individuals with neuro-cognitive conditions and their dedicated caregivers, both those who are unpaid and those in the paid work force.”

Maigret notes that the updated plan’s recommendations also call for assisting family caregivers who provide the vast majority of care for persons with Alzheimer’s and related dementias, expanding subsidies for home and community care services offered by the state’s Division of Elderly Affairs, and making family caregiver support services part of the Medicaid program.

According to Maigret, one issue not mentioned in the updated plan is the need for increasing state funding for the DEA’s respite care program, which has a waiting list. “This is an important program that gives caregivers small subsidies to purchase ‘care breaks.’ Our Aging in Community Subcommittee and the AARP and Senior Agenda Coalition will all be advocating to restore state funds to this program (in the upcoming legislative session),” she says.

“The Alzheimer’s State Plan is a thorough blueprint to address the growing Alzheimer’s crisis by creating an infrastructure and accountability that will help build dementia-capable programs,” said AARP Rhode Island State Director Kathleen Connell. “We applaud the work that has gone into the report and the continuing efforts to address Rhode Island’s growing needs. We are especially encouraged to see that the plan supports community education about caregiver health and caregiver rights under the CARE Act, which is legislation that AARP championed in the General Assembly. AARP also encourages and supports age-friendly communities, which includes dementia-friendly awareness and resources so that people of all abilities can thrive as they age.”

Sen. Coyne added, “Alzheimer’s impacts tens of thousands of Rhode Islanders, and we need a coordinated strategy to improve education among the public and training for providers, and to promote research opportunities. This plan provides a strategic framework for moving forward to bring positive policy change where it is needed.”

See you at the press conference.

For details about the press conference and the Alzheimer’s State Plan, contact Andrea Palagi, Communications Director, Office of Lt. governor Daniel J. Mckee at
Andrea.Palagi@ltgov.ri.gov.