the role of mental health patient organizations in disease management

The Role of Mental Health PatientOrganizations in Disease ManagementFocus on the US National Depressive andManic-Depressive Association

Lydia LewisNational Depressive and Manic-Depressive Association, Chicago, Illinois, USA

Contents Abstract . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6071. Encouraging People to Seek Assessment and Treatment . . . . . . . . . . . . . . . . . . . . . . . . 6092. Raising Awareness of Stigma . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6103. Enhancing Communication Between Healthcare Provider and Patient

to Maximize Treatment . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6114. Providing Accurate Answers to Questions about the Illness, Treatment,

and Adverse Effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6135. Providing Groups for Peer-To-Peer and Family Member Support . . . . . . . . . . . . . . . . . . . 6146. Serving as a Champion for Mental Healthcare Reform . . . . . . . . . . . . . . . . . . . . . . . . . 6157. Encouraging Patient-Centered Research that Results in Better Treatment . . . . . . . . . . . . . . 6168. Conclusion: We’ve Been There, We Can Help . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 616

Abstract Mood disorders are serious chronic illnesses that are the leading cause ofdisability worldwide. Up to two-thirds of all people with a mood disorder areundiagnosed. In the US, there are three suicides for every two homicides, with70% of these deaths attributed to untreated depression. Mental health advocacyorganizations play an important role in the management of these disorders byurging those who are undiagnosed or untreated to seek treatment.

Stigma is the number one barrier to mental healthcare, according to the USSurgeon General. Advocacy groups work to eliminate the stigma surroundingmental illness in order to encourage more people to seek treatment. They have arole in disease management as they enhance communication between patientsand healthcare providers, an area in which studies have shown a significant gapin perceptions. Advocacy groups educate people so that they can play an activerole in their own treatment plans. It has been demonstrated that participation inpatient support groups increases patient compliance with treatment plans anddecreases incidences of hospitalization for the illnesses.

A critical role in disease management is patient advocacy for improved accessto care, so that those needing treatment can actually receive it. Finally, mentalheath advocacy groups have a role in managing the disease through ‘grassroots’efforts to promote expanded research for better treatments, and eventually cures,for mental illnesses.

PRACTICAL DISEASE MANAGEMENT Dis Manage Health Outcomes 2001; 9 (11): 607-6171173-8790/01/0011-0607/$22.00/0

© Adis International Limited. All rights reserved.

I just wanted to die. I stood there on a street corner in themiddle of New York City and wanted more than anythingelse in the world to throw myself under the cars rushing by.Somehow I got to a phone and found the listing for yourNational DMDA support group. Going to the group, talk-ing to people who had actually been there and knew mypain, got me and kept me in treatment. The group savedmy life but it didn’t end there. Perhaps more importantlythe group set me on the road to wellness so I could have afull, rich life again.

– National Depressive and Manic-DepressiveAssociation (National DMDA) constituent

Mood disorders are devastating chronic illnessesthat can be difficult to diagnose, treat, and even sur-vive. According to the World Health Organization,major depression is the leading cause of disabilityworldwide among persons aged five years andolder, and bipolar disorder is the sixth leading causeof disability in the world.[1]

The stigma attached to mental illnesses oftencauses consumers1 to be reluctant to seek help.Stigma, along with a lack of information about theillness, lack of support, and inadequate insurancecoverage often leads to a discontinuation of treat-ment. It is estimated that two out of three peoplewith depression are untreated[2] and at least one-third of those who are treated discontinue treatmentprematurely.2

Untreated or under-treated depression has con-siderable impact. Nearly twice as many women(12.0%) as men (6.6%) are affected by a depressivedisorder each year. These figures translate to 12.4million women and 6.4 million men in the US.[4]

More than 90% of people who kill themselves havea diagnosable mental disorder, commonly a mooddisorder.[3] The death rate from suicide (11.4 per100 000 population) in the US remains higher than

the death rate for chronic liver disease, Alzheimer’sdisease, homicide, atherosclerosis or hypertension.[3]

Based on these statistics, in the US, there are threesuicides for every two homicides and at least 70%of these suicides are attributed to untreated depres-sion.

Patient advocacy groups, such as the NationalDepressive and Manic-Depressive Association(DMDA), play a critical role in disease manage-ment by the following activities.• Encouraging people to seek assessment and treat-

ment. By communicating information about theillness, especially about symptom awareness,advocacy groups can encourage consumers totake that first step to seek help and then adhereto their treatment plan. Patient advocacy groupsalso reduce the fear and isolation associatedwith mental illness by delivering a strong messageof hope and community.

• Raising stigma awareness. The stigma surroundingmental illnesses is so strong it prevents peoplefrom seeking help, makes achieving insur-ance parity difficult, weakens an already fragileself-perception and puts employment in jeop-ardy. Advocacy groups are effective in battlingstigma through public education and watchdog ac-tivities.

• Enhancing communication between healthcareprofessionals and patients to maximize treat-ment. Often a significant gap exists between thehealthcare provider’s perceptions of their com-munication with consumers and the consumer’sexperience.[5] Healthcare providers are betterable to care for and communicate with patientswith mental illnesses if they understand theseillnesses from the patient’s perspective. Con-versely, consumers can become empowered toplay an important role in the management oftheir own illnesses through information abouttreatment options, possible adverse effects, andexpected outcomes, and by understanding theirrights and minimum expectations. The creationof effective dialogue between patient and pro-fessional can lead to more positive outcomes.

• Answering questions about the illness, treatment,

1 Neither the term ‘consumer’ nor the term ‘patient’ isuniversally accepted within the mental health advocacy com-munity. For lack of a better third alternative, ‘consumer’ and‘patient’ are used interchangeably to refer to people who areafflicted with a mental illness.2 Nearly half of patients treated for depression with antide-pressants (47%) report having had adverse effects from thesemedications. Patients report that these adverse effects havecaused them to skip doses (17%) or stop taking prescribedantidepressants altogether (55%).[3]

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© Adis International Limited. All rights reserved. Dis Manage Health Outcomes 2001; 9 (11)

and adverse effects. Sometimes it is difficult tounderstand what a healthcare professional issaying – being nervous, having extremely limitedface-to-face opportunities and not under-standing the language of medical professionals,all impede getting questions answered. Advo-cacy groups provide medically and scientifi-cally reviewed information, all presented fromthe patient’s point of view. The consumer whoreceives clear, jargon-free information abouttreatment and adverse effects is much morelikely to continue treatment. Consumers who liveoutside major cities often find that mentalhealthcare providers are in short supply and thatlocal libraries have little, if any, informationavailable to answer their questions. An advocacygroup’s website is often the first place people gofor answers to their questions.

• Providing groups for peer-to-peer and familymember support. Patients and families must beactive partners for optimal recovery to occur.Support groups motivate people to follow treat-ment plans and help consumers understand thattheir illnesses do not define who they are. Theyprovide a forum for mutual acceptance, under-standing and self-discovery, and offer the op-portunity to reach out to others and benefit fromthe experience of those who have ‘been there’.

• Serving as a champion for mental healthcare re-form. Patient advocacy groups are the voice forpeople struggling with mental illness. Repre-senting extensive constituencies, their effortshave changed laws, increased funding for re-search, and advanced the fight for such criticalissues as patient confidentiality and insuranceparity.

• Encouraging patient-centered research that re-sults in better treatment and ultimately a cure ora prophylactic.Research on the causes of andbetter treatments for mental illness has a lowpriority in US federal budgets. The presence ofconsumer advocacy groups in Washington, DCkeeps the great need for increased research (andtherefore increased funding) at the forefront. In

addition, these groups work to protect partici-pants and help enroll people in clinical trials.

• Reaching the goals of better diagnosis and treat-ment of mood disorders is a daunting task becauseso many obstacles lie in the pathway. Ignorance,stigma, finances, adverse effects, inadequatemedical training, discrimination, lack of re-search – the list goes on. These goals will onlybe met with the active participation of the peo-ple most affected – patients and their families.The objective of this article is to highlight the

important ways patient advocacy organizationscontribute to improved diagnosis, treatment andcontinued wellness for the people with mental illnessand their families. Individuals who participate inthese organizations benefit greatly; both directlythrough programs and services, and indirectlythrough public education, influencing legislation andcombating stigma. The cost to underwrite advocacygroups is small when compared to the benefitsgained.

1. Encouraging People to SeekAssessment and Treatment

Depression has run in my family but not until later in life.After reading your brochure about teen depression I amgoing to tell my guidance counselors what I have beenfeeling. Thank you!!

– E-mail from a young constituent

Unlike the seven warning signs of cancer, thesymptoms of depression are not well known. De-pression can be difficult to self-identify, simply be-cause the symptoms (see table I) are frequentlysimilar to general life situations. All too often, con-sumers believe their symptoms will just go away,given enough time or a positive attitude.

The stigma surrounding mental illnesses seri-ously contributes to a consumer’s reluctance toseek diagnosis and treatment. Doctors say that pa-tient resistance, more than anything else, is a bar-rier to their ability to treat depression.[5] Advocacygroups like National DMDA work to educate thepublic about mental illnesses. Its most critical mes-sage is – these are ‘real’ illnesses that can be treated.

Mental Health Patient Organizations 609


Nearly 5000 people call National DMDA eachmonth to request information packets about mooddisorders and referrals to National DMDA self-help groups, and over 35 000 log on to its websitemonthly to spend significant time learning aboutdepression and bipolar disorder. In the first twomonths after making the first-ever bipolar self-as-sessment (Mood Disorder Questionnaire) availableon the National DMDAwebsite (www.ndmda.org),over 9000 people used the interactive tool as a wayto take the first step in seeking diagnosis.

National DMDA targets its messages by ‘goingwhere the consumers are’. It offers non-profit or-ganizations articles specially tailored to their con-stituencies for placement in their publications. Italso reaches out to employee assistance profession-als, exhibits at various trade shows and formswebsite links with television, newspaper and othermedia websites when stories about mood disordersappear. The organization is a primary media sourcefor information about mood disorders. For exam-ple, the same night as a television episode featuringa character with bipolar illness aired, a video newsrelease about the disorder, produced by NationalDMDA, was aired on 83 news programs, reachingan estimated audience of more than 4 million people.

Other advocacy organizations are also involvedin these efforts. Several years ago in the US, Na-tional Depression Screening Day was launched byan advocacy organization in concert with manymental health advocacy groups. More than 3000screening sites are active during National Mental

Health Awareness Week every October, withscreening efforts ongoing throughout the year. In theyear 2000, over 80 000 people were assessed onNational Depression Screening Day.

The National Mental Health Association (NMHA)in the US has initiated an education campaign fo-cused on children’s mental health, which will beincluded in the Campaign for America’s MentalHealth. By working with national partners, corpo-rate sponsors, and Mental Health Associationsacross the US, NMHA will broadcast its messages tofamilies, educators, advocates, primary care physi-cians, and social service and juvenile justice pro-fessionals. The campaign will use fact sheets, pressreleases and community outreach to focus on the im-portance of early detection, identification and treat-ment of mental health problems in children.

2. Raising Awareness of Stigma

I have been in therapy for years for the treatment of de-pression and anxiety. I always felt ashamed and embar-rassed for having to go and being there so I stopped. Ithought that I could handle my emotions on my own, andhave been doing so for the past few years. I dropped outof school, quit doing activities that I normally love, andcontinued to use drugs and alcohol. Visiting your web-site made me realize that I am not handling it at all andthat I should look into getting treatment again. Knowinghow many people are suffering and all for so many rea-sons, has helped me to see that I should not feel embar-rassed for seeking help.

– A response from a visitor to National DMDA’s website

Despite its high treatment success rate (up to80% of those treated show an improvement insymptoms within four to six weeks of beginningtheir treatment), nearly two out of three people withdepression in the US do not actively seek nor re-ceive proper treatment.[2]

According to the US Surgeon General in hislandmark report on mental illness: ‘Most often, re-luctance to seek care is an unfortunate outcome ofvery real barriers. Foremost among these is the stigmathat many in our society attach to mental illness andto people who have a mental illness. Stigma erodesconfidence that mental disorders are valid, treat-able health conditions. It leads people to avoid so-

Table I. Symptoms of depression. Experiencing five or more of thefollowing symptoms each day during a 2-week period or symptomsinterfering with work or family activities can indicate the presenceof clinical depression

Prolonged sadness or unexplained crying spells

Significant changes in appetite, sleep patterns

Irritability, anger, worry, agitation, anxiety

Pessimism, indifference

Loss of energy, persistent tiredness

Feelings of guilt, worthlessness

Inability to concentrate, indecisiveness

Inability to take pleasure in former interests, social withdrawal

Unexplained aches and pains

Recurring thoughts of death and suicide

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cializing, employing or working with, or renting toor living near persons who have a mental disorder,especially a severe disorder like schizophrenia.Stigma deters the public from wanting to pay forcare and, thus, reduces consumers’ access to re-sources and opportunities for treatment and socialservices. A consequent inability or failure to obtaintreatment reinforces destructive patterns of lowself-esteem, isolation, and hopelessness. Stigmatragically deprives people of their dignity and in-terferes with their full participation in society. Itmust be overcome.’[6]

National DMDA ran several successful publicservice announcement (PSA) campaigns in the lasttwo years that reached over 103 million people. Itsprint PSAs have appeared in more than a dozen na-tional magazines.

The organization has also sought other ways tocommunicate and reduce stigma. For example, theorganization has produced an award winning videoabout bipolar disorder, ‘Dark Glasses and Kaleido-scopes’ (available for rental, free of charge, in all4600 Blockbuster Video retail outlets across the US).

National DMDA joined several other mentalhealth advocacy groups to successfully advocatefor a more balanced and sensitive portrayal ofthose with mental illness in the media. Last year aconsortium of advocacy groups was successful inimplementing a letter campaign that led to the can-cellation of a television show, Wonderland, thatwas set in a mental institution and sensationalizedmental illness.

3. Enhancing Communication BetweenHealthcare Provider and Patient toMaximize Treatment

Excellent information . . . I walked a bipolar friendthrough it today in preparation for seeing a new doctorat onset of mania. It helped her itemize the symptoms,problems and how she felt. She also felt so much betterafter reading it with me, as it meant to her that many otherstruggle with this, too. Thank you so much!

– Someone who called National DMDA’s 800 numberand received an information packet.

Central to effective treatment of mental illnessis effective communication between the consumerand the healthcare provider. That communicationis often made difficult because of a lack of under-standing about the illness on the part of the patient,a lack of time available to discuss the illness withtheir healthcare provider, and the different per-spectives that consumers and providers bring to thetable.

Various surveys conducted by National DMDAunderscore this communications disconnect. Whenaskedwhatfactors impedetreatmentcompliance,morethan one-third of respondents (38%) said that theirrelationship with their doctor was a key barrier tocompliance.[7] In a survey of nearly 1400 peopletreated for depression, 28% indicated dissatisfac-tion with their health practitioner’s current treatmentof their depression. More than one-third felt theirpractitioner did not take their depression seriously,did not have the latest knowledge about availabletreatments, and/or did not care (figure 1).[8]

Another recent National DMDA survey re-vealed a significant communications gap betweenprimary care doctors and patients with depressionin the routine disclosure of some common adverseeffects when prescribing antidepressants. Thiscommunications gap was particularly striking whena comparison was drawn between the proportionof physicians who say that they usually mentioncommon adverse effects of antidepressants to pa-tients, and the proportion of patients who reportedthat they were told about the adverse effects whenantidepressants were being prescribed (figure 2).[5]

Despite the negative impact of adverse effectson both patient well-being and compliance withtherapy, there does not appear to be much discus-sion between doctor and patient concerning treat-ment preferences. Patients feel that the best ap-proach to making treatment decisions concerningtheir depression is discussing options with their doc-tor and making decisions together about what isbest. The majority of primary care doctors (71%)say that this is the way that treatment decisions aremade. Yet only 36% of patients report that theirprimary care doctor asked their preferences or will-



ingness to tolerate certain adverse effects beforemaking a decision about what to prescribe.[5]

Advocacy groups work to communicate patientneeds and perceptions to healthcare providers. Forexample, National DMDArecently completed avideo-tape for use in psychiatric residency training thatoffers a patient perspective on what is needed in theprovider/patient relationship for optimal recoveryto occur. National DMDA members also share theirunique perspectives and needs with physicians dur-ing grand rounds and at healthcare provider con-ferences.

National DMDA works to help consumers im-prove communication with healthcare providers.The wide range of books, pamphlets and brochurespublished by National DMDA suggest questionsdesigned to facilitate discussion with their providerand also offer information about common treat-ment options and adverse effects.

All patient advocacy groups believe that theconsumer must be well educated and an equal part-ner in the treatment process, and other organiza-tions provide innovative programs in this area. TheAnxiety Disorders Association of America (ADAA)enhances communication between people withanxiety disorders and healthcare professionals byoffering a wide range of services and programs thatnot only educate individuals about these disorders,but also facilitate the process of seeking proper di-agnosis and appropriate treatment. Some of theseresources include a nationwide treatment providernetwork. This network is available through indi-vidual state listings and the National ProfessionalMembership Directory (a self-help support groupnetwork with groups in nearly all 50 states). Otherresources are an annual national conference thatprovides an innovative forum for the sharing of

Very satisfiedSomewhat satisfiedSomewhat dissatisfiedVery dissatisfiedNot sure

29%

32%

15%

13%

9%

(n = 394)

Did not feel he/she took depression seriouslyDid not feel he/she had latest knowledge about treatmentsDid not feel he/she caresDid not feel he/she understoodDid not feel he/she respected

38%

34%

38%

56%

33%

(n = 394)

a b

Fig. 1. Results of a National Depressive and Manic-Depressive Association survey of those who have been treated for depressionshowing (a) the degree of satisfaction with current treatment and (b) the perception of the healthcare provider’s attitude.[8]

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treatment information and research data, as well aspersonal experiences, and an extensive website.

4. Providing Accurate Answers toQuestions about the Illness, Treatment,and Adverse Effects

Thank you so much for making this so thorough and easyto understand. I am on (name of medication deleted) andhave been for about 7 months. Depression runs in myfamily so I’ve been told lots about it but it’s nice to knowthat there is a scientific basis to it and it’s not all in myhead.

– Letter from a National DMDA constituent

Where does a consumer or family member turnwhen they have a question about treatment, medi-

cation adverse effects or the illness? Many go onl-ine and wade through anecdotal, inaccurate andsometimes harmful information. Others spendhours with information written for professionals inindecipherable professional jargon. And, unfortu-nately, for far too many consumers the answer is –nowhere. They simply never seek help, or they stoptreatment against the advice of their healthcareprovider. An estimated 50% of unsuccessful treat-ments for depression are due to medical non-com-pliance. Patients stop taking their medication toosoon because of intolerable adverse effects and/orshort term improvement of symptoms (leadingthem to believe that continuing treatment is unnec-essary), and/or fear of addiction.[8]

0 10 20 30 40 50 60 70 80 90

810

17Sweating

815

18Blurredvision

1321

18Weight

loss

823

21Diarrhea

523

28Irritability

1039

38Anxiety

933

36Shaking

1635

39Headache

1947

44Nausea

2243

51Fatigue

1960

56Insomnia

1647

60Weightgain

1669

82Sexualproblems

Identified by patientIdentified by doctorCommon adverse effects

Percentage

Fig. 2. Common adverse effects recognized by doctors, and identified by patients.



According to a recent National DMDA study,professionals identified sexual problems and body-weight gain as the adverse effects their patients orclients were most concerned about. A majority ofdoctors (61%) and therapists (62%) said their patientswere particularly concerned about sexual prob-lems; and the majority of doctors (53%) and ther-apists (59%) also identified bodyweight gain as ofparticular concern to patients.[5] The consequencesof adverse effects of antidepressants resulted in thepatient not taking a prescribed antidepressant alto-gether (55%) or skipping doses of the prescribed anti-depressant (17%).[5]

Consumer organizations work to increase pa-tient compliance by providing accurate, medicallyreviewed information in formats written for con-sumers, not for physicians. The general public needsto know that although all treatments work, they donot all work for everybody. People also need toknow that a wide variety of treatment options isavailable. National DMDA publishes brochuresexplaining all available medications and how theydiffer from each other. The various ‘talk therapy’options are also explained. The organization alsopublishes a pamphlet, ‘When Treatment Fails’, togive guidance and hope to those having difficultymanaging their symptoms. National DMDA patientsupport groups also help with treatment adherence,because group members have credibility that thosewithout the illness can never have.

National DMDA recently published a book, Re-storing Intimacy, that deals frankly with sexualproblems related to mood disorders and their treat-ments. The book has a question and answer format.The questions were selected from those submittedto a special website.

Other advocacy organizations do equally cre-ative and important work. For example, the Childand Adolescent Bipolar Foundation (CABF) has anonline drug interaction database to help parentsidentify how medications might affect their chil-dren (www.bpkids.org).

The National Alliance for the Mentally Ill (NAMI)is committed to providing support and education.This is provided in person through 1200 local af-

filiates, and by telephone through the toll-freeNAMI Helpline, which provides information aboutmental illnesses, their treatments, and communityresources.

5. Providing Groups for Peer-To-Peerand Family Member Support

I was impressed with the wealth of resources available ateach support group meeting, and the high quality level ofmutual support that took place at each group I have at-tended . . . the group helped me obtain therapists,guided me with insurance issues and encouraged me towrite articles about my episode. The group has given mea place to talk about having a mood disorder and I didnot have this kind of support in my life before coming tothe group.

– National DMDA support group participant

Mood disorders can be devastating (even fatal)illnesses. And they do not just affect the consumer– they affect families, friends and coworkers. Sup-port groups offer a place for consumers and theirfamily and friends to go and receive information,advice and support to help them live with their ill-ness and move them toward wellness.

Attending a National DMDA support group canbe an important step in restoring social functioningand opening the door to hope. Feelings of hopeless-ness and isolation are two critical symptoms of mooddisorders. Taking an active role in these supportgroups can often be the next step in the recoveryprocess. Support groups can also provide a localresource for community information, assisting inspreading the word about the illness, its treatmentand the availability of local resources.

A recent survey of support group members re-vealed that 95% of those surveyed described theirgroup as helping them communicate with their doc-tor, motivating them to follow instructions, encour-aging them to take medication and cope with itsadverse effects, and making the treatment plan lesscomplex.[7]

The survey found that the longer people had at-tended a National DMDA group, the less likelythey were to have stopped medication against med-ical advice. Also, there is a statistically significant

614 Lewis


tendency for people who have been attending Na-tional DMDA groups longer to report less depres-sion and mania during the past four months. In ad-dition, people who had been attending a NationalDMDA group for more than a year were less likelyto have been hospitalized in the past year.[7]

Advocacy groups help establish support groups,train support group facilitators, and refer con-sumers to local groups. National DMDA has morethan 800 consumer-run support groups. Other orga-nizations also facilitate support group developmentand maintenance. Some, like NAMI, focus primar-ily on supporting families and friends. Others, likeCABF, focus on parents. CABF’s support groupsare primarily ‘virtual’, the online format allowingmore flexibility for the group members to ‘meet’.

6. Serving as a Champion for MentalHealthcare Reform

Working in partnership with families, healthcare profes-sionals, policymakers and patients themselves you areraising public awareness of the importance of research,the availability of effective treatment, and the need for im-proved access to care

– US Past President Bill Clinton (letter to NationalDMDA dated Aug 9, 2000)

Rent, food, or a prescription? For many peoplestruggling with mood disorders, treatment deci-sions come down to this level. Unless and untilmedical insurance coverage for mental illness isequal to coverage for other medical illnesses, accessto care (i.e. diagnosis and treatment) will continueto be denied to millions.

As of December 1999, 87% of compliant USemployer (healthcare insurance) plans contained atleast one or more restrictive provisions for mentalhealth benefits. Most prevalent were restrictionson the number of outpatient office visits and hos-pital day limits, with nearly two-thirds of compli-ant employer plans having lower limits for mentalhealth than for medical and surgical benefits.3

Mental health advocacy groups play a criticalrole in advocating on a national level for insuranceparity for mental illnesses so that consumers canafford to receive treatment and stay in compliance

with treatment plans. In addition, advocacy groupsare actively ensuring that local and state laws andordinances support access to care and provide ex-cellent treatment for consumers with mental illnesses.

NAMI has developed a federal legislativeagenda that includes:[9]

• mandating non-discriminatory coverage of men-tal illnesses by health insurers

• development of housing and rehabilitation em-ployment programs appropriate to the needs ofindividuals with severe mental illness, and

• reforming federal disability programs to re-move the disincentives to return to work.At the state level, NAMI has developed OMIRA

– the Omnibus Mental Illness Recovery Act: ABlueprint for Recovery.[10] OMIRA proposes modellegislation in nine areas, including:• consumer and family participation• parity in insurance coverage• access to newer medications• support for programs of assertive community

treatment• creation of housing alternatives• creation of work incentives• reduction in the use of seclusion and restraint• development of alternatives to jail for people

with severe mental illness, and• improved treatment systems for children with

mental illnesses.NMHA and its state organizations are particu-

larly effective in advocating for better care on thelocal level to enhance community services withand for consumers. States, and increasingly counties,are attempting to reform their behavioral healthcareservices for Medicaid recipients at a breakneckpace in order to conserve scarce resources. TheNMHA Healthcare Reform Advocacy Training[11]

helps consumers, families, and advocates strengthentheir voices to ensure that those most affected bysuch reforms have a voice in how these changes are

3 Testimony given by Kathryn G. Allen, associate directorat the Health, Education, and Human Services Division ofthe US General Accounting Office (GAO) before the SenateCommittee on Health, Education, Labor, and Pensions onMay 18, 2000.



implemented. With over 100 training events in thepast five years, a variety of issues have been suc-cessfully addressed such as managed care reform,mental health and substance abuse parity, access tomedications, and consumer rights.

7. Encouraging Patient-CenteredResearch that Results in BetterTreatment

I suffer from depression and manic depression. My doctorsays that I’m class 3 rapid cycling bipolar disorder. It isreal serious at the present time. I’m curious to know whatyou have that may help me understand what my mind isgoing through. I have several moods in a 24 hour period.My doctor says that’s not good but I also suffer from thelack of sleep. My doctor increased my medicine again.That’s my problem – my body is sensitive to medicine. I’vereacted to almost 50 psychological medicines, it scars meto try new medicines. I will appreciate what you can dofor me!

– Letter addressed to National DMDA

A letter like this one can break your heart. Hear-ing from people whose doctors and therapists havetried everything to no avail reminds all of us thatno current treatment for any mood disorder is 100%effective.

Advocacy groups play a critical role in the fightfor increased funding for research into new andbetter treatment options. As a result of the effortsof US advocacy organizations, funding for the Na-tional Institute of Mental Health increased by 14%in the year 2001. National DMDA also encouragesparticipation in clinical trials but urges potential part-icipants to ask some important questions beforesigning any consent agreement.

NAMI is especially active in educating its mem-bers for involvement in their local Institutional Re-view Boards and in ensuring that there is consumerrepresentation on all large National Institute ofMental Health clinical trial oversight committees.

National DMDA convenes conferences of topmood disorder researchers to reach a consensus onbest practices and share knowledge in the field. Italso provides awards each year to young mood dis-order researchers as a way to ensure that emergingtalent is encouraged in their work. Another National

DMDA award acknowledges the lifetime researchwork of senior investigators.

The National Alliance for Research on Schizo-phrenia and Depression (NARSAD), a group formedby four mental health advocacy organizations, in-cluding National DMDA, is the largest donor-sup-ported organization in the world devoted exclu-sively to supporting scientific research on brainand behavior disorders (www.mhsource.com/nar-sad/). It has so far awarded over $US99 million inresearch grants to more than 1236 scientists at 164leading universities, institutes and teaching hospi-tals in the US, Canada, and overseas.

8. Conclusion: We’ve Been There, We Can Help

As a consumer-run and consumer-focused orga-nization, National DMDA plays a critical role inadvocating for those touched by these devastatingillnesses. It helps by:• encouraging individuals to seek diagnosis and

treatment• uncovering stigma• enhancing communication between healthcare

professionals and patients to maximize treat-ment

• answering questions about the illness, treat-ment, and adverse effects

• providing groups for peer-to-peer and familymember support

• serving as a champion for mental healthcare re-form, and

• encouraging patient-centered research that re-sults in better treatment and eventually a cure.Consumer advocacy groups offer a perspective

that healthcare providers, no matter how skilled,well-meaning and effective they might be, must hearand understand to successfully treat mood disorders.They provide needed consumer-oriented informa-tion, critical support, and most important of all – hope.In a phrase, ‘We’ve been there, and we can help’.

References1. World Health Organization.About mental health [online].Available

from: URL: http://www.who.int/mental_health/aboutmh.html[Accessed 2001 Aug 22]

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2. Hirschfeld MA, Keller MB, Panico S, et al. Consensus state-ment on the undertreatment of depression. JAMA 1997;277 (4): 333

3. National Center for Health Statistics. Deaths: final data for1998. National Center for Health Statistics, Centers for Dis-ease Control, Department of Health and Human Services[online]. Available from: URL: http://www.cdc.gov/nchs/about/major/dvs/mortdata.htm [Accessed 2001 Aug 22]

4. Narrow WE. One-year prevalence of depressive disordersamong adults 18 years of age and over in the US: NIMH ECAprospective data. Population estimates based on US Censusestimated residential population age 18 and over on 1998 July.

5. Schulman, Ronca & Bucuvalas, Inc. Beyond diagnosis: a land-mark survey of patients, partners and health professionalson depression and treatment. 2000 Aug. National DMDA.In press

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About the Author: Lydia Lewis is Executive Director of theNational Depressive and Manic-Depressive Association(National DMDA) and serves on the National Institutes ofHealth Director’s Council of Public Representatives as wellas several oversight boards for National Institute of MentalHealth clinical trials. Prior to joining National DMDA, MsLewis spent 11 years as Executive Director of the Commit-tee of 200 (C200 – the Iinternational Association of WomenBusiness Executives). Prior to this she held various market-ing positions at AT&T and holds a Bachelor of Arts in Psy-chology from the State University of New York at Buffalo.One of her proudest accomplishments has been her willing-ness to do life-long battle with depression.Correspondence and offprints: Lydia Lewis, National De-pressive and Manic-Depressive Association, 730 NorthFranklin, Chicago, 60610-7240, USA.E-mail: [email protected]



the role of mental health patient organizations in disease management

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