The U.S. Department of Health and Human Services Works to Improve the Quality of Life and the Health of Individuals Living with Multiple Chronic Conditions
 
The U.S. Department of Health and Human Services (HHS) has created a workgroup to develop ideas for improving the health of individuals who suffer from multiple chronic conditions.  If you have kidney disease, you may also suffer from a variety of other health conditions like diabetes and/or heart disease.

DPC commends HHS Secretary Kathleen Sebelius for working to improve the quality of life and the health of individuals who are living with chronic diseases.  DPC submitted the letter below to the Secretary thanking her for the agency’s attention to this issue and provided our input on the workgroup’s initial plan.
 

DPC Letter to HHS Secretary Kathleen Sebelius

June 18, 2010

The Honorable Kathleen Sebelius
Secretary, United States Department of Health and Human Services
Hubert H. Humphrey Building
200 Independence Avenue, S.W., Room 736-E
Washington, DC 20201

Attention: MCC Strategic Framework

Submitted via Email

RE: HHS Interagency Workgroup on Multiple Chronic Conditions draft strategic framework

Dear Secretary Sebelius,

Dialysis Patient Citizens (DPC) commends the Department of Health and Human Services (HHS) for its work to improve the health and quality of life of individuals with multiple chronic conditions (MCC).  As a national, non-profit consumer advocacy group dedicated to improving the lives of individuals with Chronic Kidney Disease (CKD), who are on dialysis or are pre-dialysis, we are pleased to have the opportunity to provide comments to the Interagency Workgroup on Multiple Chronic Conditions on its draft strategic framework.  While prevention of chronic disease is important and an area of our organization’s continued focus, we believe it is equally as important to improve the health and well-being of those who are currently being treated for multiple chronic conditions.  

Diabetes and hypertension are the two leading causes of kidney failure.  Once an individual loses function of their kidneys, this often can result in cardiovascular disease, anemia and other serious chronic conditions.  Access to high quality care and patient education and empowerment resources can go a long way towards controlling and reducing the number of chronic conditions an individual with kidney disease experiences. To that end, we appreciate the work HHS is conducting around this issue, and we look forward to being an active participant in the implementation and development of initiatives surrounding the MCC strategic plan.

Goal 1: Provide better tools and information to health care and social service workers who deliver care to individuals with MCC

Working with health care providers to establish and disseminate best practice guidelines and tools to improve the health of individuals with MCC as well as prevent people from developing additional chronic conditions is important. Equally important is the development of best practices and tools patients with MCC and their families can use.  Engaging individuals with chronic

disease in discussions on the best ways to manage their own care at home and providing them with tools to do so will facilitate better health outcomes for these individuals.  For example, individuals with kidney disease may also have heart disease and diabetes.  Understanding and learning to adhere to a special diet to accommodate for each of these conditions can be a struggle for many patients.

Additionally, patients sometimes receive conflicting information on managing their diet from different specialists.  Establishing guidelines as proposed in Strategy 1.C.1 is a step towards ensuring individuals with MCC receive consistent advice that pertains to their individual needs. 

Many recent health care bills and regulatory efforts have focused on improving the nation’s health care quality.  DPC encourages the HHS MCC workgroup to look towards current pilots and efforts underway in public programs to ensure quality measurements for individuals with chronic disease are focused on improving health and preventing the development of additional chronic conditions.  For patients on dialysis, the Medicare Improvements for Patients and Providers Act (MIPPA) requires CMS to develop a Quality Incentive Program (QIP) that will establish performance measurements for dialysis providers.  This program is currently under development by CMS and a proposed rule is expected to be released for comment this summer.  DPC is hopeful that as this QIP grows; adopted performance measurements will focus on reducing patients’ risk of developing comorbid chronic diseases like cardiovascular disease, which is the leading cause of death for individuals with kidney failure. 

Goal 2: Maximize the use of proven self-care management and other services by individuals with MCC

DPC has seen in the patients we work with that those patients who take an active role in their care tend to be the ones who have a more positive outlook and a better quality of life.  Self care can include anything from proper management of diet and exercise at home to actual self care of treatment.  Many dialysis patients actually conduct their dialysis treatments at home on their own or with the assistance of a family member or loved one.  This is why it is important that best practice information and tools discussed in Goal 1 are also developed for patients and their family members. The MCC workgroup should also broaden the focus of goal 2 in finding ways to expand the availability of home therapies and educate patients on home therapy options.  Many patients may desire and benefit from treatment at home.  As mentioned, often times “self care” may also require assistance from family members and loved ones and DPC is pleased that HHS has acknowledged the important role family members play in the care of loved ones. 

DPC agrees that addressing depression, which is common in people with MCC, is important.  Chronic disease can cause many people to feel as if they have lost their independence and in turn become frustrated with limitations they may experience. This can lead to severe depression, which can be further detrimental to individuals’ health and ability to care for themselves.  Being taught to care for oneself properly can help patients feel empowered as they find they can be independent and have more control over their conditions.  Additionally, in a

dialysis setting, clinics are required to have a social worker on staff to work with patients.  Social workers in other MCC care settings may play a vital role in helping individuals cope with their condition and in recognizing signs of depression and referring patients for diagnosis and treatment.

Patients with multiple chronic conditions have many different reasons for lack of treatment adherence and compliance, particularly when it comes to taking prescribed medications.  While the development of tools and resources will help somewhat for this population, additional steps must be taken and HHS is in the unique position to lead this effort.  Lack of adherence often results from a lack of care coordination and conflicting and confusing messages from different physicians.  Even with care management tools and resources, not all patients may be able to resolve these treatment coordination issues on their own.  This is one reason our organization has supported the creation of accountable care organizations for people with chronic disease.  These models hold one group of providers accountable for the totality of an individual’s health, making it easier for patients to understand their own role in their care while also avoiding conflicting provider messaging.

It also cannot be overlooked that the costs of many prescription medications are one reason patients do not adhere to their medication regimen.  While health care reform will make great strides in helping individuals better afford their medications, there are many financial resources available to assist patients in paying for their medications. However, patients are not always aware of these resources. The workgroup should add a strategy to develop a comprehensive list of financial assistance programs available to help individuals pay for common medications used to treat a variety of chronic conditions and associated complications. 

Goal 3: Foster health care and public health system changes to improve the health of individuals with MCC

DPC lauds the strategy of care coordination proposed in Goal 3.  For people on dialysis their nephrologist and dialysis clinic staff often serve as de-facto primary care providers; however, without proper coordination with other physicians and providers, complications may arise in this population.  As mentioned above, cardiovascular events are the leading cause of death for people with kidney failure.  Heart complications arise from a number of different factors found in this population, including diabetes, hypertension, anemia, and calcification of arteries, among others.  It is important that care coordination models utilize and incentivize all providers to take part. 

The goals for care coordination set forth in the framework are commendable, but the strategies to achieve these goals should be focused on improvement of outcomes rather than the maintenance of current outcomes.  Particularly troubling is the alternative option in strategy 3.A.2., which states “or that maintain present health outcomes while decreasing net costs.”  DPC recommends striking this section of the strategy and keeping intact the first part, which focuses on expanding pilots that improve health outcomes and quality of life. Lower costs are

expected with improved quality of care.  As individuals’ health and functionality improve, individuals will require less resource intensive care.

Lacking as a strategy component to achieving goal 3 is the improvement of individuals’ nutrition.  As previously mentioned, patients often receive conflicting nutritional advice from different providers that do not account for their other health conditions.  Additionally, many individuals with MCC are malnourished for reasons relating to a lack of access to foods they need, inability to cook and shop for themselves, and a lack of education on the foods they should be eating.  Nutritional supplements, educational tools and resources, and food preparation and delivery services need to be more broadly utilized by individuals with MCC.  Additionally, programs and guidance on proper nutrition needs to account for the multiple health issues these individuals have.

Goal 4: Facilitate research to fill knowledge gaps about individuals with MCC

As a partner in the Partnership to Fight Chronic Disease (PFCD), we echo the comments made in their letter that refer to the need to mine existing Medicare data to assess the number of individuals with MCC (both prevalence and incidence), their health status and to identify those at risk of MCC.  Examining existing, available data will allow for more timely development of additional strategies to reduce incidence of MCC and improve health and quality of life for those with MCC.  Both Medicare part A data and part B data should be married to provide a comprehensive look at the care and health status for those with MCC. 

As mentioned above, for dialysis patients, Medicare will begin a payment incentive program related to quality in 2012.  It is our hope that as the program progresses it will measure and incentivize improvements to patients’ health status that have a direct impact on reducing comorbid conditions. As an example, individuals with kidney failure are unable to process calcium and phosphorus naturally and must reduce their intake of these minerals and take medications to help the body better utilize and excrete them.  Without proper management individuals may suffer from hyperparathyroidism and cardiovascular calcification among other conditions.  Because of the multiple conditions people with kidney failure either have or are at risk for, the Medicare program for dialysis patients is one ideal setting for piloting efforts to improve health outcomes and quality of life.

Addressing disparities in care is a difficult and often controversial task; we commend the workgroup for setting forth a goal to conduct further research on these disparities.  We ask that while many factors play in to health disparities that a particular focus be placed on racial disparities to assess if race is indeed an independent predictor of health and resource utilization and if so why.  One particular issue we in the kidney care community are struggling with is the higher utilization and costs of care for treating African Americans with kidney failure.  To date we have been unable to explain the increased utilization of care needed by this population.  More research into disparities, particularly racial disparities related to outcomes, is needed.

In addition to our above recommendations on the goals set forth in the MCC strategic framework, we also request that a goal and strategies be targeted at improving the quality of life for people with MCC.  Quality of life includes components like functionality: the ability to work, volunteer, or complete household tasks.  It also includes individuals’ feelings of health, energy, and ability and desire to spend time enjoying the company of family, friends and loved ones.  Measuring a person’s quality of life can only happen if providers engage individuals in dialogue with their patients. 

It is also important that when implementing the proposed strategies, particularly in a care coordination model and the development of best practice guidelines, that care delivered is patient-centered.  Information on patients’ experience with the care they receive and the improvements in their functionality and feelings of health should be collected and used by health care providers as a component to tailoring patient care to the individuals they treat. 

Thank you for the opportunity to comment on this valuable strategic framework.  It is important for HHS to continue involving consumer groups and individuals afflicted by various chronic conditions as you progress in this mission.  We hope that as you move forward with this framework that you will call upon us as a resource of individuals living with kidney disease and other chronic illness. 

Sincerely,

 

Chad Lennox
Executive Director