Tuesday, June 8, 2010

Caring for Multiple Chronic Illnesses

The US Department of Health and Human Services has issued a draft strategy for controlling multiple chronic conditions, seeking comments from the public. We filed the following comments in partnership with Lybba yesterday:

June 11, 2010


U.S. Department of Health and Human Services
200 Independence Avenue, S.W.
Room 736-E
Washington D.C. 20201
Attention: MCC Strategic Framework

Dear Sir/Madam:

Thank you for this opportunity to comment on the Department’s Draft Strategic Framework addressing approaches to patients with multiple chronic illnesses.

Advocacy for Patients with Chronic Illness, Inc. is a 501(c)(3) tax exempt organization that provides free information, advice and advocacy services to patients with chronic illnesses nationwide in areas including health and disability insurance, Social Security disability, employment discrimination, family and medical leave, educational equity, and resource location. We strive to meet the needs of the chronically ill. In our five years, we have worked on over 5,000 matters for a total of more than 3,500 individuals, the vast majority of whom have more than one chronic illness. In addition, we recently completed a survey conducted in partnership with the University of Michigan Center for Managing Chronic Disease which further substantiated the fact that many, if not most, patients with chronic illnesses have more than one chronic illness. Thus, we are pleased to have an opportunity to share our experience with you in the formulation of this strategic framework.

Lybba is a 501(c)(3) nonprofit research, design, and media organization dedicated to innovation through collaboration in the medical sciences. We create compelling interaction environments, films, and social media campaigns that build interest, enrich understanding, and provide compelling ways for people to engage constructively with chronic health issues. Through the power of design, computational power, data visualization, and the network effect, Lybba amplifies everyone’s efforts by orders of magnitude. Our online community, conceived by film‐maker Jesse Dylan, is one of the web’s first personal health platforms to integrate social networking and reliable medical knowledge into treatment histories and care plans that provide patients with what they need to make their own path toward wellness.

It is our joint experience that patients with digestive, neurological and rheumatologic diseases tend to be presented with a cluster of challenges – Crohn’s disease and multiple sclerosis, lupus and rheumatoid arthritis, chronic fatigue syndrome and fibromyalgia – most in the autoimmune category. In our experience, it is more common for patients to have more than one chronic illness (i.e, comorbidities) than it is for them to have only one. This requires a high degree of care coordination, and presents challenges with medication management, duplication of tests, and conflicting advice. As you state, “[t]his picture is even more complex as some combinations of conditions, or clusters, have synergistic interactions, but not others.”

The complexity of living with multiple chronic conditions (MCC) carries with it significant costs. With two-thirds of every health care dollar spent in the United States going to the cost of chronic care, it is imperative that we all – patients included – work together to find ways to provide quality care for lower cost.

While it may well be true, as you suggest, that most old and frail people have MCCs, we question whether it is equally true, as you also suggest, that most people with MCCs are old and frail. Indeed, we work with patients every single day who, with tools and guidance, are learning to play a more active role in managing their own care. Studies have established the value of actively involving a patient in his or her own care. “Knowledge and experience held by the patient has for too long been an untapped resource. It is something that could greatly benefit the quality of
patients’ care and ultimately their quality of life, but which has been largely ignored in the past. . . .”1 “Collaborative [c]are acknowledges the centrality of patients as primary caregivers by integrating them as key actors in the care process.”2

As many of us recognize, patients who learn to navigate the system, practice shared decision-making with their doctors, and evaluate their care do obtain improved outcomes, and improved outcomes reduce cost.3 “[P]atients with an array of chronic conditions who were enrolled in a comprehensive self-care management program experienced significant improvements in adherence to medical regimens . . . , health behavior change recommendations . . ., psychosocial and emotional distress caused by illness, self-reported health status, reduced occurrence of hospitalizations, and reduced costs of care.”4 Indeed, one study found that patient centered practice improved health status and increased the efficiency of care by reducing diagnostic tests and referrals – again, resulting in lower costs.5
Around 90 percent of the care a person needs to manage a chronic disease must come directly from the patient. Evidence is growing that self-management interventions, such as self-monitoring and decision making, lead not only to improvements in health outcomes and health status, but also to increased patient satisfaction and reductions in hospital and emergency room costs. 6
Thus, although we do not intend to minimize the significant role caregivers play in the care of patients with MCCs, and the need to care for the caregivers through respite programs and other means, we also feel strongly that failing to fully appreciate and utilize the resources patients represent is a lost opportunity – and a costly one, at that.

It is our belief, based on our extensive experience working with people with MCCs, that investing in teaching them self-management tools will be paid back many times over in the form of improved health outcomes. There are a sufficient number of experiments from North Carolina7, Vermont8, Massachusetts9, Minnesota10, Pennsylvania11, New York12, and elsewhere that have proven that patient-centered medical homes save money. However, improved health and decreased cost outcomes were only accomplished with up-front investments. in no instance was this accomplished without an up-front investment.

For example, Advocacy for Patients can and does give seminars, webinars, weblogs, and other tutorials on how to find insurance if you have a pre-existing condition; how to prepare a health or disability insurance appeal; how to seek reasonable accommodations at work or school; how to use the internet to find available resources; and on other areas important to people living with MCCs. Since Advocacy for Patients is a small organization that cannot represent every patient with a chronic illness who needs help, so we spend a fair amount of time teaching and coaching those patients whom we cannot represent directly. We take care of those who are too frail or infirmed to represent themselves; but those who are not cognitively impaired, who can – and indeed, who want to – represent themselves, we teach. Advocacy for Patients’ cornerstone publication, Know Your Rights: A Handbook for Patients with Chronic Illness, reaches at least 1,000 patients a year, and increasingly is sought after by medical offices, hospitals, and libraries. Advocacy for Patients does all of this on a budget of under $200,000. We are certain that we are saving society more than that in health care expenses by keeping people insured, in their jobs, in school, and with their needs met.

Lybba also offers patients communication and self-management services. We take a novel and organic approach which yields self‐organizing and informed communities where compassion is the currency and discovery is the purpose. For example, a person with MCCs, (neuromyelitis optica and lupus, both of which are chronic, incurable autoimmune conditions) can use Lybba’s web portal to connect with other NMO and lupus patients, but also with the larger community of individuals with rare and chronic conditions. Connections made between users leads to new
knowledge about shared co-morbidities, effective and ineffective treatment options, treatment side-effects and pain management, all of which leads to empowered patients, new break-throughs in disease treatment and management and improved and more comprehensive care. Lybba’s unique design features and capabilities will help to speed new discoveries from the “bench” to the “bed,” getting patients the information they need to take charge of and improve their quality of life.

HHS’s second goal of maximizing the use of proven self-care management and other services by patients with MCCs can be enriched by this sort of outside-the-box thinking. HHS should harness the information and experience of the chronic illness community/organizations that work directly with people living with MCCs, as well as the agencies and other stakeholders described in the report. The answers to self-management issues will come in large part from the community of patients with MCCs through nonprofits like Advocacy for Patients and Lybba. We know how to teach patients to manage their own diseases because we are patients ourselves, and we have learned, through hard experience, that self-management pays off for everyone in the system. Even something as simple, but critically important, as medication self-management needs to be taught. We who manage our own medication regimen on a daily basis have developed tools for doing so successfully. We can teach other patients to do the same, and allowing us to share our experience is far less costly than having health care professionals do it for us.

Similarly, patients play a critical role in care coordination. For example, Advocacy for Patients’ Executive Director, Jennifer Jaff, has Crohn’s disease, gastroparesis, high blood pressure, arthritis, and asthma. Every time a doctor writes an order for blood work, she ensures that the doctor instruct the lab to send her a copy. She then sends a copy to every one of her physicians. In the absence of multi-state, multi-pracrtice electronic medical records, this is a system that works, that costs the system nothing, and that most patients would be pleased to do if only given the tools and the opportunity.

Also of primary importance to Lybba is the appreciation of the underlying connections that exist between chronic conditions that lead to better care coordination and management. Included in Lybba’s online platform is the ability to connect across diseases with patients, researchers and physicians. The social networking and patient participation aspects of Lybba allow for those underlying connections and similarities to naturally surface within the community.

In conclusion, involving patients in HHS’s strategy for addressing the needs of patients with MCCs is inexpensive, intelligent, and, indeed, necessary for the success of disease management programs. If patients do not buy into the programs you put in place – if they are not given the respect and dignity that come with a clearly defined role and responsibilities – attempts at managing MCC will fail. Thus, we strongly urge you to consider involving patient-based organizations like ours in developing a strategy for controlling both the cost and the ill effects of MCCs.


Jesse Dylan
8330 West 3rd Street
Los Angeles, CA 90048
(323) 653-2300

Jennifer C. Jaff, Esq.
Executive Director
Advocacy for Patients with Chronic Illness
18 Timberline Drive
Farmington, CT 06032
(860) 674-1370

1 R. Tattersall, “The expert patient: a new approach to chronic disease management for the
twenty-first century,” Clinical Medicine Vol. 2 No. 3, 227-229 (May/June 2002) (citation
2 J.H. Hibbard, “Engaging Health Care Consumers to Improve the Quality of Care,” Medical
Care, 41 (1), I-61-70, at I-64 (citation omitted).
3 Ibid. at I-63.
4 Ibid. at I-65 (citations omitted).
5 Stewart, Moira PhD; Judith Belle Brown, PhD; Allan Donner, PhD; Ian R. McWhinney, OC,
MD; Julian Oates, MD; W. Wayne Weston, MD; John Jordan, MD. The Impact of Patient-
Centered Care on Outcomes, The Journal of Family Practice (J Fam Pract) 2000; 49: 796-
6 California HealthCare Foundation, .
7 B.D. Steiner et al. (2008.) Community Care of North Carolina; Improving care through
community health networks. Annals Family Medicine, 6:361-367.
8 Department of Health, (2009). Blueprint for health annual report Burlington, VT: Retrieved
from Vermont department of Health. 2008 Annual Report January 2009 Blueprint for
Health. Burlington, VT Dept. of Health 2009.
9 Beal, A.C., M.M. Doty, S.E. Hernandez, K.K. Shea, K. Davis. Closing the Divide: How Medical
Homes Promote Equity in Health Care: Results from The Commonwealth Fund 2006 Health
Care Quality Survey, The Commonwealth Fund, June 2007.
10 Isetts, et al. (2008.) Journal American Pharm Assoc. 48(2):203-211.
11 Leff B, Reider L, Frick K et al. (2009.) Guided care and the cost of complex health care: a
preliminary report. American Journal Managed Care, 15(8):555-559.
12 Rosenthal, T. C., M. E. Horwitz, et al. (1996.) Medicaid Primary Care Services in New York
State: Partial Capitation vs Full Capitation." Journal of Family Practice, 42(4):362-368.


  1. I have diagnosed with fibromayalgia, ibs, endometriosis, chf, hx of pe, asthma, duopacemaker with defibrillator, 10 abd surgeries regarding ovarian cysts and now have chronic abd pain some of which is caused by tearing scar tissue. The last surgery they had to dissect my organs to get to the torsion of which I felt no pain due to scar tissue. I have migraines and various types of dizziness and vertigo, nausea, degenerative disc disease in my neck along with a spur, scoliosis and twisted spine, arthrosis and arthritis throughout low back and other joints. I'm now have disassociation with pain and physio-psyciatric stress tremors which has impeded verbal skills and ambulation. I also have ptsd from experiences in hospitals. My doctors are frustrated with my need for more of their time than any other patient in their practice. I'm 45 yrs old. Doctors often feel like I'm mentally ill or I wouldn't be this sick and that I should have anxiety in regards to new pain and issues even though I've had so many close calls with death. Can anyone help? I'm so tired. kka032167@yahoo.com

  2. I want to add I was found to have Eagle's syndrome which if calcified ligaments in the jaw as well as recently diagnosed with mast cell activation syndrome which is an allergic reaction at a cellular level. I was rearended from a car going 55mph and I was stopped. I got whiplash. I now have a problem with overstimulation. I can't handle noise, smells, lights, colors, and too much going on at a time. I'll get a migraine, have uncontrollable vomiting which may trigger an asthma flare-up;ibs flare-up; and fibromayalgia flare-up. I go to court for disability this month. My big thing is prevention while trying live my life the best I can.