The Official Patient's Sourcebook on Lupus (29 page)

not sure you have Part A, look on your red, white, and blue Medicare card. It

will show “Hospital Part A” on the lower left corner of the card. You can

also call the Social Security Administration toll free at 1-800-772-1213 or call your local Social Security office for more information about buying Part A. If you get benefits from the Railroad Retirement Board, call your local RRB

office or 1-800-808-0772. For more information, call your Fiscal Intermediary

about Part A bills and services. The phone number for the Fiscal

Intermediary office in your area can be obtained from the following Web

site:
http://www.medicare.gov/Contacts/home.asp
.

Part B (Medical Insurance)

Helps Pay For:
Doctors, services, outpatient hospital care, and some other medical services that Part A does not cover, such as the services of physical

and occupational therapists, and some home healthcare. Part B helps pay for

covered services and supplies when they are medically necessary.

Cost:
As of 2001, you pay the Medicare Part B premium of $50.00 per month.

In some cases this amount may be higher if you did not choose Part B when

you first became eligible at age 65. The cost of Part B may go up 10% for each 12-month period that you were eligible for Part B but declined coverage,

except in special cases. You will have to pay the extra 10% cost for the rest of your life.

Enrolling in Part B is your choice. You can sign up for Part B anytime during

a 7-month period that begins 3 months before you turn 65. Visit your local

Social Security office, or call the Social Security Administration at 1-800-772-1213 to sign up. If you choose to enroll in Part B, the premium is usually

taken out of your monthly Social Security, Railroad Retirement, or Civil

Service Retirement payment. If you do not receive any of the above

payments, Medicare sends you a bill for your part B premium every 3

months. You should receive your Medicare premium bill in the mail by the

10th of the month. If you do not, call the Social Security Administration at 1-800-772-1213, or your local Social Security office. If you get benefits from the Railroad Retirement Board, call your local RRB office or 1-800-808-0772. For

more information, call your Medicare carrier about bills and services. The

Your Rights and Insurance 167

phone number for the Medicare carrier in your area can be found at the

following Web site:
http://www.medicare.gov/Contacts/home.asp
. You may

have choices in how you get your healthcare including the Original

Medicare Plan, Medicare Managed Care Plans (like HMOs), and Medicare

Private Fee-for-Service Plans.

Medicaid

Medicaid is a joint federal and state program that helps pay medical costs for some people with low incomes and limited resources. Medicaid programs

vary from state to state. People on Medicaid may also get coverage for

nursing home care and outpatient prescription drugs which are not covered

by Medicare. You can find more information about Medicaid on the

HCFA.gov Web site at
http://www.hcfa.gov/medicaid/medicaid.htm
.

States also have programs that pay some or all of Medicare’s premiums and

may also pay Medicare deductibles and coinsurance for certain people who

have Medicare and a low income. To qualify, you must have:

· Part A (Hospital Insurance),

· Assets, such as bank accounts, stocks, and bonds that are not more than

$4,000 for a single person, or $6,000 for a couple, and

· A monthly income that is below certain limits.

For more information on these programs, look at the Medicare Savings

Programs brochure,

http://www.medicare.gov/Library/PDFNavigation/PDFInterim.asp?Langua

ge=English&Type=Pub&PubID=10126
. There are also Prescription Drug Assistance Programs available. Find information on these programs which

offer discounts or free medications to individuals in need at

http://www.medicare.gov/Prescription/Home.asp
.

NORD’s Medication Assistance Programs

Finally, the National Organization for Rare Disorders, Inc. (NORD)

administers medication programs sponsored by humanitarian-minded

pharmaceutical and biotechnology companies to help uninsured or under-

insured individuals secure life-saving or life-sustaining drugs.
62 NORD

62 Adapted from NORD:
http://www.rarediseases.org/cgi-

bin/nord/progserv#patient?id=rPIzL9oD&mv_pc=30
.

168 Lupus Nephritis

programs ensure that certain vital drugs are available “to those individuals

whose income is too high to qualify for Medicaid but too low to pay for their

prescribed medications.” The program has standards for fairness, equity,

and unbiased eligibility. It currently covers some 14 programs for nine

pharmaceutical companies. NORD also offers early access programs for

investigational new drugs (IND) under the approved “Treatment INDs”

programs of the Food and Drug Administration (FDA). In these programs, a

limited number of individuals can receive investigational drugs that have yet

to be approved by the FDA. These programs are generally designed for rare

diseases or disorders. For more information, visit
www.rarediseases.org
.

Additional Resources

In addition to the references already listed in this chapter, you may need

more information on health insurance, hospitals, or the healthcare system in

general. The NIH has set up an excellent guidance Web site that addresses

these and other issues. Topics include:
63

· Health Insurance:

http://www.nlm.nih.gov/medlineplus/healthinsurance.html

· Health Statistics:

http://www.nlm.nih.gov/medlineplus/healthstatistics.html

· HMO and Managed Care:

http://www.nlm.nih.gov/medlineplus/managedcare.html

· Hospice Care:
http://www.nlm.nih.gov/medlineplus/hospicecare.html

· Medicaid:
http://www.nlm.nih.gov/medlineplus/medicaid.html

· Medicare:
http://www.nlm.nih.gov/medlineplus/medicare.html

· Nursing Homes and Long-term Care:

http://www.nlm.nih.gov/medlineplus/nursinghomes.html

· Patient’s Rights, Confidentiality, Informed Consent, Ombudsman

Programs, Privacy and Patient Issues:

http://www.nlm.nih.gov/medlineplus/patientissues.html

· Veteran’s Health, Persian Gulf War, Gulf War Syndrome, Agent Orange:

http://www.nlm.nih.gov/medlineplus/veteranshealth.html

63 You can access this information at:

http://www.nlm.nih.gov/medlineplus/healthsystem.html
.

Your Rights and Insurance 169

Vocabulary Builder

Auscultation:
The act of listening for sounds within the body, chiefly for ascertaining the condition of the lungs, heart, pleura, abdomen and other

organs, and for the detection of pregnancy. [EU]

Chest Pain:
Pressure, burning, or numbness in the chest. [NIH]

Fatigue:
The state of weariness following a period of exertion, mental or physical, characterized by a decreased capacity for work and reduced

efficiency to respond to stimuli. [NIH]

Online Glossaries 171

ONLINE GLOSSARIES

The Internet provides access to a number of free-to-use medical dictionaries

and glossaries. The National Library of Medicine has compiled the following

list of online dictionaries:

· ADAM Medical Encyclopedia
(A.D.A.M., Inc.), comprehensive medical

reference:
http://www.nlm.nih.gov/medlineplus/encyclopedia.html

· MedicineNet.com Medical Dictionary (MedicineNet, Inc.):

http://www.medterms.com/Script/Main/hp.asp

· Merriam-Webster Medical Dictionary (Inteli-Health, Inc.):

http://www.intelihealth.com/IH/

· Multilingual Glossary of Technical and Popular Medical Terms in Eight

European Languages
(European Commission) - Danish, Dutch, English,

French, German, Italian, Portuguese, and Spanish:

http://allserv.rug.ac.be/~rvdstich/eugloss/welcome.html

· On-line Medical Dictionary (CancerWEB):

http://www.graylab.ac.uk/omd/

· Technology Glossary (National Library of Medicine) - Health Care

Technology:
http://www.nlm.nih.gov/nichsr/ta101/ta10108.htm

· Terms and Definitions (Office of Rare Diseases):

http://rarediseases.info.nih.gov/ord/glossary_a-e.html

Beyond these, MEDLINEplus contains a very user-friendly encyclopedia

covering every aspect of medicine (licensed from A.D.A.M., Inc.). The

ADAM Medical Encyclopedia Web site address is

http://www.nlm.nih.gov/medlineplus/encyclopedia.html
. ADAM is also

available on commercial Web sites such as Web MD

(
http://my.webmd.com/adam/asset/adam_disease_articles/a_to_z/a)

and

drkoop.com (
http://www.drkoop.com/
). Topics of interest can be researched by using keywords before continuing elsewhere, as these basic definitions

and concepts will be useful in more advanced areas of research. You may

choose to print various pages specifically relating to lupus nephritis and

keep them on file. The NIH, in particular, suggests that patients with lupus

nephritis visit the following Web sites in the ADAM Medical Encyclopedia:

172 Lupus Nephritis

·
Basic Guidelines for Lupus Nephritis

Hypertension

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/000468.htm

Lupus nephritis

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/000481.htm

SLE

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm

Systemic lupus erythematosus

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/000435.htm

·
Signs & Symptoms for Lupus Nephritis

Blood in the urine

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm

Chest pain

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003079.htm

Cough

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003072.htm

Decreased urine output

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003147.htm

Edema

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm

Online Glossaries 173

Erythema

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm

Fatigue

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm

Fever

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003090.htm

Hematuria

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003138.htm

Joint pain

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003261.htm

Joint swelling

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003262.htm

Rash

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003220.htm

Seizures

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003200.htm

Swelling

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003103.htm

·
Diagnostics and Tests for Lupus Nephritis

ALT

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003473.htm

174 Lupus Nephritis

ANA

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003535.htm

Antinuclear antibody

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003535.htm

Biopsy

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003416.htm

Blood pressure

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003398.htm

BUN

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003474.htm

Casts

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003586.htm

Complement

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003456.htm

Complement component 3

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003539.htm

Creatinine

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm

Dialysis

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003421.htm

Online Glossaries 175

Kidney biopsy

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003907.htm

Urinalysis

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003579.htm

Urine immunoglobulin light chain

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003597.htm

·
Nutrition for Lupus Nephritis

Protein

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/002467.htm

·
Surgery and Procedures for Lupus Nephritis

Kidney transplant

Web site:

http://www.nlm.nih.gov/medlineplus/ency/article/003005.htm