Tag Archives for AARP State Director Kathleen Connell

RI Senate Tackles High Cost of Prescription Drugs – Herb Weiss

Published in RINewsToday.com on March 15, 2021

In the shadow of the COVID-19 pandemic, as Governor Dan McKee and the Rhode Island General Assembly move to hammer out their Fiscal Year 2022 budget, Senate lawmakers push a package of eight legislative proposals to put the brakes on skyrocketing cost of prescription drugs.

The Senate resolution (2021-S 0560) sponsored by Senate Majority Whip Maryellen Goodwin (D-District 1, Providence), has already been passed and complements the prescription drug affordability package that will be considered next week that would require health insurers to provide coverage, without cost sharing, for colorectal screenings and follow-up colonoscopies when necessary.

The package of legislation aims to protect Rhode Islanders by limiting copays for insulin, capping out-of-pocket expenses for high deductible plans, requiring health insurers to cover preventive colorectal cancer screening, eliminating clauses hidden in pharmacy contracts that prevent a pharmacist from talking about more affordable options, requiring transparent pricing information, importing wholesale prescription drugs from Canada, and creating a board responsible for evaluating and ensuring drug prices are affordable. 

According to Greg Paré, the state Senate director of communications, this package of legislative proposals was developed in conjunction with AARP during the off session before the 2020 Senate session and first submitted last year, but legislation considered last session was limited due to the pandemic and so it did not pass. The legislation has been resubmitted this year with some small modifications and remains a Senate priority.

Last year, AARP along with 14 groups including, the Alzheimer’s Association, the American Cancer Society Action Network, and Aging in Community, urged lawmakers to pass the package of legislative proposals.  Expect to see some of these groups again call for passage of either the total package or specific bills at a Senate Health and Human Services Committee’s virtual hearing, chaired by Sen. Joshua Miller, on Thursday, at 5:00 p.m. For the hearing’s agenda, go to: For hearing details go to: https://bit.ly/3ezofmJ.

Passage of this legislative package would require action by both the Senate and House. At press time, not all of the Senate bills have companion measures in the House.   

Controlling the Skyrocketing Increase of Prescription Drugs

Here are specifics about the Senate’s prescription drug affordability legislative package that will be considered next week by the Rhode Island’s Senate Health and Human Services Committee:  

Legislation (2021-S-0170 sponsored by Sen. Melissa A. Murray (D–Dist. 24, Woonsocket, North Smithfield), would limit the copay for prescription insulin to $50 for a 30-day supply for health plans that provide coverage for insulin. Additionally, the bill mandates that coverage for prescription insulin would not be subject to a deductible.  

Legislation (2021-S 0381)sponsored by Senate Majority Leader Michael J. McCaffrey (D–Dist. 29, Warwick), would cap out-of-pocket expenses for prescription drugs at the federal minimum dollar amount for high-deductible health plans, currently $1,400 for individual plans and $2,800 for family plans.    

The bill (2021-S-0383), sponsored by Senator Goodwin (D–Dist. 1, Providence), would save lives by requiring health insurers cover preventive colorectal cancer screening in accordance with American Cancer Society (ACA) guidelines. This coverage must be provided without cost-sharing and includes an initial screening and follow-up colonoscopy if screening results are abnormal. The ACA recommends people at average risk of colorectal cancer start regular screening at age 45.  

A bill (2021-S -497) sponsored by Sen. Walter S. Felag Jr. (D–Dist. 10, Warren, Bristol, Tiverton) would allow consumers to pay less for their prescription drugs by banning gag clauses sometimes found in pharmacy contracts that prevent a pharmacist from talking to a customer about more affordable options.   

This bill (2021-S-0494) would require pharmaceutical drug manufacturers, pharmacy benefit managers, health insurers, and hospitals to disclose certain drug pricing information. Such transparency would help payers determine whether high prescription costs are justified. This bill is sponsored by Senate President Dominick J. Ruggerio (D – Dist. 4, North Providence, Providence).  

This bill (2021-S-0499), sponsored by Sen. Louis P. DiPalma (D–Dist. 12, Middletown, Little Compton, Newport, Tiverton), would create a state-administered program to import wholesale prescription drugs from Canada, which has drug safety regulations similar to those of the United States. Such programs are allowed under federal rules, with approval from the U.S. Department of Health and Human Services. 

This legislation (2021-S0498) would create a prescription drug affordability board tasked with investigating and comprehensively evaluating drug prices for Rhode Islanders and possible ways to reduce them to make them more affordable. The bill is sponsored by Sen. Cynthia A. Coyne (D–Dist. 32, Barrington, Bristol, East Providence). 

The bill (2021-S 0496) introduced by Sen. Felag (D-District 12, Bristol, Tiverton, Warren) aims to protect consumers from unexpected changes in their health plan’s formularies (list of covered drugs). Under the legislation, formulary changes can only be made at the time of health plan renewal, if the formulary change is made uniformly across all identical or substantially identical health plans, and if written notice is provided 60 days or more before the change. 

Seniors Hit Hard by High Price of Prescriptions

“The high price of prescriptions is having a severe impact on Rhode Islanders, particularly older residents,” said Ruggerio, noting the state’s population is one of the oldest in the nation.  “Many older Rhode Islanders have limited means, and the high cost of prescriptions means people are 

Ruggerio warns that the pharmaceutical industry is not going to address this on its own, so it’s up to the state and federal governments to take action.”

Maureen Maigret, Co-Chair, Long Term Care Coordinating Council, observes that with Medicare paying the tab for costly pharmaceuticals, controlling rising drug costs is a federal issue.  “But this is a big issue to address for those with low and moderate incomes under-insured for prescription drugs,” she says. “I applaud the Senate legislative package aimed at controlling the cost of prescription drugs for Rhode Islanders, says Maigret, who cites the findings of a Kaiser Family Foundation survey that shows one out of four persons take four or more prescription drugs and more than one-third say that have difficulty taking their medication properly due to cost.  “Seniors may fail to get prescriptions filled, resort to pill splitting or skipping doses. Some may end up with costly hospital Emergency Rooms or inpatient visits as health conditions worsen due to the inability to afford their medications, notes Maigret, calling for lawmakers to make necessary prescription drugs affordable for all who need them. Maigret says, “It is time to make necessary prescription drugs available for all who need them.”

“AARP Rhode Island is eager to work with both the Senate and the House of Representatives to pass this important legislation designed to lower prescription drug costs,” said AARP State Director Kathleen Connell. “The high cost of drugs leads families – and particularly older Rhode Islanders on fixed and limited incomes — to often make impossible decisions. No one should have to choose between paying rent, providing food for themselves or their family and vital prescription medications that keep them healthy,” she says.

We look forward to working with legislators from across the state to help improve the health and financial stability of everyone by lowering the cost of prescription drugs. We thank Senate President Ruggerio for once again bringing forth this very important legislation,” adds Connell.

It’s mid-March. Lawmakers turn their attention now to passing the state budget.  Even if the Senate passes every bill in the prescription drug affordability package, the lower chamber must pass companion measures for these bills.  When passed, Governor Dan McKee must sign the legislation to become law.  Right now, it’s an uphill battle and Rhode Islanders must call on their state lawmakers to get on board to support bills to reduce the high cost of pharmaceuticals.  It’s the right thing to do. 

Things that You Should Know 

This meeting will be streamed live online through Capitol TV:

http://www.rilegislature.gov/CapTV/Pages/default.aspx

Written testimony is encouraged and can be submitted prior to 2:00 PM on Thursday, March 18, 2021, in order for it to be provided to the members of the committee at the hearing and to be included in the meeting records. Finally, if you are interested in providing verbal testimony to the committee at this hearing, please go to the following link and make your request by 4:00 p.m., on Wednesday, March 17, 2021:  https://bit.ly/3bIJAs2

New Study Looks at Better Ways to Instruct Caregivers

Published in Woonsocket Call on October 2, 2016

A new report released by United Hospital Fund and AARP Public Policy Institute, using feedback directly gathered from caregivers in focus groups, provides valuable insight as to how video instruction and training materials can be improved to help caregivers provide medication and wound care management.

AARP Public Policy Institute contracted with United Hospital Fund (UHF) to organize the discussion groups, which took place in March through December of 2015 and were conducted in English, Spanish, and Chinese. A new report, , released on September 29, 2016, summarizes key themes from the discussions and suggests a list of “do’s and don’ts” for video instruction.

Gathering Advice from Caregivers

In a series of six discussion groups with diverse family caregivers — 20 women and 13 men of varying ages and cultures (Spanish and Chinese) — in New York, participants reported feeling unprepared for the complex medical and nursing tasks they were expected to perform at home for their family member. The participants reported that educational videos lack instructional information and also failed to address their emotional caregiving issues. Stories about poor care coordination came up during the discussions, too.

“These discussion groups gave family caregivers a chance to describe their frustration with the lack of preparation for tasks like wound care and administering medication through a central catheter. But participants also demonstrated how resourceful they were in finding solutions on their own,” said Carol Levine, director of UHF’s Families and Health Care Project and a co-author of the report.

According to Levine, this initiative to study caregiver perspectives on educational videos and materials is an outgrowth of a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care, released by UHF and the AARP Public Policy Institute. The findings of this on-line national survey of a representative sample of caregivers noted that 46 percent of family caregivers across the nation were performing complicated medical and nursing tasks such as managing medications, providing wound care, and operating equipment for a family member with multiple chronic conditions. These caregivers felt they were not being adequately prepared by the health care system to perform these tasks and they told researchers that they were often stressed, depressed, and worried about making a mistake. Most of these caregivers had no help at home.

The new caregiving report is an important resource for AARP’s broader national initiative known as the Home Alone AllianceSM which seeks to bring together diverse public and private partners to make sweeping cultural changes in addressing the needs of family caregivers. “The wealth of information we learned from these discussion groups has guided the development of our first series of videos for family caregivers on medication management, and will inform future instructional videos,” said Susan C. Reinhard, RN, PhD, Senior Vice President of AARP Public Policy Institute and co-author of the report. Specific segments of the first series of videos include Guide to Giving Injections; Beyond Pills: Eye Drops, Patches, and Suppositories; and Overcoming Challenges: Medication and Dementia. The videos are on the AARP Public Policy Institute’s website and United Hospital Fund’s Next Step in Care website. Additional video series will focus on topics including wound care, preventing pressure ulcers, and mobility.

In preparation for the discussion group (lasting up to 2 hours and held on different days and locations) ), UHF staff reviewed literature on video instruction and adult learning theory for patients and caregivers and selected several currently available videos on education management and wound care to show to caregivers to stimulate discussion and cull feedback on content and presentation style. Felise Milan, MD, an adult learning theory expert at Albert Einstein College of Medicine, was a consultant to the project.

A New Way of Teaching

For UHF’s Carol Levine, one of the biggest insights of this study was the resourcefulness shown by caregivers in “finding information [about managing medication and wound care] that they had not been provided, creating their own solutions when necessary.” “These are strengths that are seldom recognized,” she says.

“We found that caregivers were eager to learn how to manage medications and do wound care more comfortably for the patient and less stressful for themselves. Providers often use the same techniques they would use to train nursing students or other trainees, and are not aware how the emotional attachment of caregiver to patient affects the tasks, and how adults need learning based on their own experiences, not textbook learning,” says Levine, stressing that providers need more time to work with caregivers to provide follow-up supervision.

Existing teaching videos used for providing information to caregivers were generally found not to incorporate adult learning theory, says Levine, noting that they were intended to teach students, not caregivers. “In watching the videos, the caregivers clearly stated that they wanted to see people like themselves learning to do the tasks, not just a provider demonstrating them. They also didn’t respond well to attempts at humor. For them, these tasks are serious business, and they want information, not entertainment,” she added.

Levine says that she believes that videos and interactive online instruction can be a powerful tool in helping caregivers learn and practice at home. “We encourage other organizations to consider developing videos in the area of their expertise, and we encourage all who communicate with caregivers to look at the list of “Dos and Don’ts” for advice about presenting information in ways that caregivers can best absorb it [detailed in her recently released report].

“However, we strongly believe that good clinical advice and supervision are essential. Videos are not “instead of” they are “along with” clinical care,” adds Levine.

CARE Act Gives More Info to Rhode Island Caregivers

“The report reflects the need to make family caregivers more confident that they have the knowledge and instructions to provide the best possible care of their loved ones,” said AARP State Director Kathleen Connell. “This is why implementation of the CARE (Caregiver Advise, Record, Enable) Act will be so important here in Rhode Island, as it addresses some of the anxiety that accompanies a patient’s hospital discharge.

“In most cases, hospitals do their best to prepare patients for discharge, but instruction has not always been focused on preparing a designated caregiver for medical tasks they may be required to perform. The CARE Act is designed to provide caregivers with the information and support they need. As the report indicates, an instructional video may not always answer all their questions. Like physicians, caregivers feel they should abide by the ‘first do no harm’ approach. And that’s hard sometimes if there is uncertainty that comes from a lack of instruction. Caregivers also are especially tentative about treating wounds and managing medications.

“This can lead to some unfortunate outcomes: Patients can suffer when mistakes are made; caregivers feel increased or debilitating stress; and hospitals readmission rates go up.
“In short, we need to listen to caregivers and all work together to support the work they do.”

For a copy of the caregiver report, go to http://www.uhfnyc.org/publications/881158.

Whitehouse Pushes for Medicare to Pay for Person-Centered Care

Published on July 11, 2016 in Pawtucket Times

At a June hearing of the U.S. Senate Special Committee on Aging, Senator Sheldon Whitehouse calls for improving care for over 90 million Americans with advanced illnesses like Alzheimer’s disease, cancer, and heart disease. On the day of this Aging panel hearing, the Rhode Island Senator unveiled his legislative proposal, “Removing Barriers to Person-Centered Care Act,” at this panel hearing that would promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

The hearing, titled “The Right Care at the Right Time: Ensuring Person-Centered Care for Individuals with Serious Illness,” explored ways to improve the quality and availability of care and examined care models that are helping people with serious illness and their families.

Having Important Life Conversations

The June 23 hearing pulled together witnesses who called for “about the need for families and health care providers to prioritize these important life conversations, so that individuals’ wishes are known and person-centered care is prioritized,” noted U.S. Senator Susan Collins, who chairs the Senate Special Committee on Aging. In her opening statement the Maine Senator called for federal policies to “support efforts to relieve suffering, respect personal choice, provide opportunities for people to find meaning and comfort during serious illness, and – most important – remain in control of their own care.”

Advance care planning conversations to a patients’ physical, emotional, social and spiritual well-being are important in the care of a patient, says Collins. However, studies reveal that less than one-third of physicians have reported that their practice or health care system has a formal program in place to assess patients’ goals or preferences, she notes.

Collins also shared a personal story of a close friend who benefited from the person-centered care she received while she was a patient at the Gosnell Memorial Hospice House in Scarborough, Maine. “Despite her serious illness, because of hospice care her days were filled with visits from friends and families and many joyful moments, and she was surrounded by her family when she died peacefully,” she said.

“I’ve heard from Rhode Islanders about how difficult it can be for patients battling serious, advanced illnesses to get the care and respect they want,” said Whitehouse.

Whitehouse noted that “We can do better by these patients. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support models of coordinated care that focuses on the full person. Payment systems should reward providers for honoring patients’ own preferences for their care.

As Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, “Being Mortal, mentioned in his testimony, “people with serious, potentially life-limiting illnesses face substantial and increasing suffering, particularly during the last year of life. Medical care today typically exacerbates this suffering, often without any benefit of lengthened life. We have an opportunity to change this.”

“The goal is not a good death. Instead, the goal is to have as good a life as possible all the way to the very end,” say Dr. Gawande.

In her testimony, Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, who is living with stage IV inflammatory breast cancer stand stressed the importance of palliative care, which is designed to improve the quality of life for patients with serious illness.

“Palliative care is the best friend of the seriously ill,” said Berman, “Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer.”

Finally, Dr. Kate Lally, Chief of palliative care for the Providence-based Care New England Health System, Medical Director of the Integra Accountable Care Organization, and Assistant Professor of Medicine at Alpert Medical School of Brown University, urged Congress to consider legislation that would improve the quality, not just the quantity, of life of the seriously ill. “I feel blessed to do this work, and to be able to reflect with my patients on the life they have lived, their joys and regrets,” she said. “I feel I am able to share some of the most sacred moments of their life, and be at their side as they consider what is most important to them in their limited time.”

“The healthcare system as a whole, as well as Medicare and Medicaid, need to face growing expectations about how people with serious or terminal illnesses are treated,” said AARP Rhode Island State Director Kathleen Connell. “We are investing in prevention and early treatment and getting better results. Ultimately, however, people will still face serious illness and palliative care. Person-centered care is the proper prescription, and we must strive to make sure that it’s available. We need to be vigilant when it comes to supporting a healthcare environment in which patients with serious illness feel they are well informed and can remain properly in control of their options. And while families still tend to avoid these discussions in advance, when the time is right proper guidance makes a world of difference.

“People form especially strong opinions about decisions made that may prolong their existence, but add little to the quality of lives and, in fact, can prolong suffering,” Connell added. “Conversations on this phase of life are critical and we applaud Senators Collins and Whitehouse for their contribution to this dialogue.”

Legislation to Support New Models of Coordinated Care

The thrust of Whitehouse’s legislative proposal is to promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

“Too many Rhode Island Medicare patients battling difficult illnesses are struggling to get the right care at the right time,” said Whitehouse. “We need to break down the barriers between patients and the care they need. Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support new models of coordinated care that are focused on human beings and not some rule or regulation.”

Whitehouse’s legislation would establish a pilot program administered by the Centers for Medicare and Medicaid Services (CMS) made up of twenty “advanced care collaboratives” of affiliated health care providers and community-based social service organizations. Collaboratives would receive a planning grant to assess the needs of the population of patients it would serve; to purchase or upgrade health information technology to facilitate better coordination of care between providers; and to support education and training on documenting and communicating beneficiary treatment preferences and goals.

Once planning is complete, collaboratives would enter a three-year payment agreement with Medicare to provide coordinated, high-quality care for their target patient population. Under the terms of the pilot program, CMS would waive regulations to promote innovative care for patients with advanced illness.

Waivers would be granted to allow Medicare patients to receive hospice care and curative treatment at the same time. Currently CMS’s regulations force patients to choose one or the other for their terminal illness. Patients would be able to also receive Medicare coverage in a skilled nursing home without a consecutive three-day inpatient hospital stay. Under current Medicare rules, patients are often charged for skilled nursing care after they leave an inpatient hospital stay because they were hospitalized for observation rather than admitted to the hospital.

Whitehouse’s legislative proposal would also allow Medicare patients to receive home health services without the requirement that they be homebound. Under current rules, a patient’s condition must have progressed such that there “exists a normal inability to leave home,” denying these services to those who are seriously ill but still mobile. Finally, it would also allow nurse practitioners to sign home health and hospice care plans and certify patients for the hospice benefit. Right now, only doctors can do so, even though nurse practitioners are often the ones administering home health and hospice care. This forms another barrier for patients seeking these services, especially in underserved and rural areas.

According to Tom Koutsoumpas, Co-Chair of the Coalition to Transform Advanced Care’s (C-TAC) Board of Directors, Whitehouse’s legislative proposal is “a critical step forward to achieving high-quality, coordinated care for those with advanced illness. This legislation allows for important innovations in care delivery and removes obstacles to support patients throughout the care continuum.”