compassionate allowances outreach hearing cardiovascular disease & multiple organ transplants...

Compassionate Allowances Outreach HearingCardiovascular Disease & Multiple Organ Transplants

Social Security AdministrationNovember 9, 2010

Ileana Piña, MD, MPHAmerican Heart Association

Cardiovascular Disease

• 81 million American adults – more than 1 in 3 – have one or more types of CVD

• # 1 killer of Americans – including women

• Includes high blood pressure, coronary heart disease, heart failure, stroke, and congenital cardiovascular defects

Social Security Disability

• CVD can affect ability to work, comply with medical care, engage in activities of daily living

• Complex process; application denied or require multiple applications

• 24-month waiting period for Medicare

• CVD events may occur before eligibility (hospitalizations or death)

Heart Failure

• Often the final pathway of a multitude of heart disorders

• Affects 5.8 million Americans• Chronic and progressive• Affects children and adults• One of the worst sequelae of any heart disease• Many hospitalizations and high mortality• Cannot be cured

HF: Highest 30-day Rehospitalization Rate

Jencks et al. N Engl J Med 2009;360:1418-28.

Outcomes in Patients Hospitalized with HF

0

25

50

75

100

20%

50%

30Days

6Months

Hospital Readmissions

0

25

50

75

100

12%

50%

30Days

12Months

Mortality

33%

5Years

Mean LOS: 6.5 days

Fonarow, GC. Rev Cardiovasc Med. 2002;3(suppl 4):S3Jong P et al. Arch Intern Med. 2002;162:1689

Annual mortality rate-NYHA class III HF-12% [COPERNICUS DATA]NYHA class II HF-7% [SCD-HeFT DATA]

Causes of Hospital Readmission for CHF

Over 2/3 of HF Hospitalizations Preventable

Diet Noncompliance24%

Rx Noncompliance 24%

16%Inappropriate Rx

19%Failure to Seek

Care

17%Other

Post d/c monitoring

Annals of Internal Medicine 122:415-21, 1995

Heart Failure Symptoms

• Shortness of breath• Swelling in feet, ankles, legs, or abdomen• Weight gain• Tiredness, fatigue• Persistent coughing or wheezing• Lack of appetite or nausea • Confused or impaired thinking• Symptoms may be present even at rest

Evaluating Heart Failure Status

• LV Function – Non-invasive imaging (MRI, Transthoracic Echo, Doppler)– Cardiac catheterization

• BNP and NT-Pro-BNP – Predictive of mortality; CV events; overall prognosis– Highly variable; lacks specificity; false positives

• Functional Capacity – Most accurate is cardiopulmonary exercise testing– 6 minute walk to determine function of sicker patients

• Prognosis for Improvement– No reliable scales or measures

HF: Compassionate Allowances

• With medical therapy:– 6-min walk distance less than 309 feet– VO2 max less than 50% of predicted– Or are dependent upon inotrope therapy

or mechanical support • Cardiac rehab may not available or not covered

• Extremely high risk of mortality

• Should be considered for Compassionate Allowances List

Congenital Cardiovascular Disease• 9 out of every 1,000 births

• Severe malformations – complete absence of one or more chambers (hypoplastic left heart syndrome, single ventricle) or valves (aortic, tricuspid or pulmonary atresia)

• Increases the risk of pulmonary hypertension, arrhythmias, infective endocarditis, congestive heart failure, and the need for anticoagulants

Impact of Congenital Heart Disease• Severe functional limitations

• Highly specialized care required; frequent office visits and hospitalization; complicated medicine regimens

• Often full-time care giver support

• Developmental delays or learning difficulties

• Adults may not be able to work

Symptomatic Progression for Adults with Congenital Heart Disease• Variable

• Worst Prognosis: single ventricle or systemic right ventricle

• Frequently develop HF as adults

Heart Transplantation• Waiting for a heart transplant:

– Have advanced heart failure and a poor prognosis– Those most likely to be offered a heart have a 50%

1-year mortality– Most are unable to drive and require

transportation; usually cannot work– May have constant infusion of an intravenous drug

Heart Transplantation• Waiting for a heart transplant:

– 20 - 25% of children do not receive an organ in time due to severity of illness and donor scarcity

– Reasons for transplants in children are age-dependent:

Birth – 1 year: congenital 1 – 10 years: congenital and cardiomyopathy

Heart Transplantation Issues• VAD – bridge to transplant – wound care and

battery change assistance• Rejection, immunosuppression, co-morbidities

and malignancies• Impaired exercise capacity • Cardiac rehab may not available• Medication side effects (muscle weakness;

drug induced diabetes, obesity, and high blood pressure)

The Disability Process• Severe CVD can result in:

– Major life changes: physical, financial, professional, social, emotional, and psychological

– Mobility and stamina challenges– Inability to work; career-ending; lack of income– Increasing dependence on others for care

The Disability Process• Hurdles applying for disability benefits:

– Confusing and lengthy process– Denials and reapplications common– 2-year wait until eligible for Medicare – Rehabilitation not readily available– Patients are very ill, helpless on many levels– Timely assistance is critical

AHA Recommendations• Reduce the time between submission of

disability application and approval of benefits

• Offer temporary disability benefits for those with severe CVD until a complete review is completed

• Reduce the 24-month Medicare waiting period

AHA Recommendations:Compassionate Allowances List

• Advanced HF patients who are candidates for LVAD or heart transplant

• Adults with CVD and class IV symptoms and cyanotic adult congenital heart disease where transplant is the only option

• Class IV symptoms with intractable primary pulmonary hypertension where lung transplantation is the only hope

AHA Recommendations:Compassionate Allowances List

• Class IV disease where a treatment option exists, (hypertrophic cardiomyopathy [surgery], sarcoid heart disease, amyloidosis, [? immunosuppression], prolonged QT interval with SCD [implanted defibrillator], etc.)

• HF patients with a 6-min walk distance less than 309 feet, VO2 max less than 50% of predicted, or are dependent upon inotrope therapy or mechanical support

AHA Recommendations:Compassionate Allowances List• Fulminant giant cell myocarditis in which

urgent intervention is required• Lymphomatous invasion of the heart• Congenital heart disease with Eisenmenger

physiology and pulmonary vascular disease• Congenital heart disease and NYHA Class 4

symptoms

AHA Recommendations:Compassionate Allowances List• Congenital heart disease and severe cyanosis

(tetralogy of Fallot, transposition of the great arteries, tricuspid atresia, pulmonary atresia, truncus arteriosus and total anomalous pulmonary venous connection)

• Congenital heart disease after Fontan palliative surgery and protein losing enteropathy

• Congenital heart disease after Fontan with systolic or diastolic dysfunction

AHA Recommendations:Compassionate Allowances List• Transposition of the great vessels after

Mustard procedure and RV dysfunction• Hypoplastic left heart syndrome• Valvular atresia – aortic, tricuspid, pulmonary

valve• Single ventricle patients with congestive heart

failure• Childhood myocardial infarction

Thank You

Questions?

American Heart Associationwww.heart.org