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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Osteochondritis dissecans


Other Names for this Disease
  • Aseptic necrosis
  • OD
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Your Question

My husband has had osteochondritis dissecans for a number of years and has undergone multiple surgeries.  His condition is causing him more pain and disability than ever. He can hardly walk without assistance. He's been recommended knee replacements, but our insurance won't cover this surgery. Is there any advice that you can give me?  I'm not sure how I can help him.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is osteochondritis dissecans?

In osteochondritis dissecans, a loose piece of bone and cartilage separates from the end of the bone because of a loss of blood supply. The loose piece may stay in place or fall into the joint space, making the joint unstable. This causes pain and feelings that the joint "sticks" or is "giving way." Osteochondritis dissecans usually affects the knees and elbows.[1]
Last updated: 6/4/2009

Are there organizations that can give us information and resources to help us learn about the management of chronic pain?

Yes. Additional information and supportive resources for chronic pain can be obtained from the following organizations:

The Mayday Pain Project
c/o SPG
136 West 21st Street, 6th Floor
New York, NY 10011
Telephone: 212-366-6970
Fax: 212-366-6979
E-mail: mail@painandhealth.org
Web site: http://www.painandhealth.org

American Chronic Pain Association (ACPA)
P.O. Box 850
Rocklin, CA 95677-0850

Toll-free: 800-533-3231
Telephone: 916-632-0922
Fax: 916-632-3208
E-mail: ACPA@pacbell.net
Web site: http://www.theacpa.org

National Foundation for the Treatment of Pain
1330 Skyline Drive, #21
Monterey, CA 93940
Telephone: 831-655-8812
Fax: 831-655-2823
E-mail: markgordon@paincare.org
Web site: http://www.paincare.org

American Pain Foundation
201 North Charles Street
Suite 710
Baltimore, MD 21201
Toll-free: 888-615-PAIN (7246)
Telephone: 410-783-7292
Fax: 410-385-1832
Email: info@painfoundation.org
Web site: http://www.painfoundation.org 

Last updated: 6/5/2009

How can I find nonprofit organizations that provide information on obtaining financial aid for medical treatments?

Information on financial aid for medical treatments can be obtained from the following patient advocacy organizations. These organizations may be able to help you find resources to assist with the cost of your husband's costly surgeries: 

National Patient Advocate Foundation
725 15th St. NW, Tenth Floor
Washington DC, 20005
Phone: 202-347-8009
Fax: 202-347-5579
E-mail: action@npaf.org  
Web site: http://www.npaf.org  

Patient Advocate Foundation
700 Thimble Shoals Boulevard Suite 200
Newport News, VA 23606
Phone: 800-532-5274
Fax: 757-873-8999
E-mail: help@patientadvocate.org  
Web site: http://www.patientadvocate.org  

Patient Services Incorporated
P.O. Box 1602 Midlothian, VA 23113
Toll-free: 1-800-366-7741
E-mail: uneedpsi@uneedpsi.org
Web site: http://www.uneedpsi.org/  

Patient Access Network Foundation
P.O. Box 221858
Charlotte, NC 28222
Phone: 866-316-7263
E-mail: contact@patientaccessnetwork.org  
Web site: http://www.patientaccessnetwork.org/  

The Healthwell Foundation
P.O. Box 4133
Gaithersburg, MD 20878
Toll-free: 800-675-8416
E-mail: info@healthwellfoundation.org  
Web site: http://www.healthwellfoundation.org/index.aspx  

In addition, you may find the following resources to be helpful and may want to speak with your state or county health department or social workers at your local hospital to request more information on available resources.

DisabilityInfo.gov provides quick and easy access to comprehensive information about disability programs, services, laws and benefits. You can search for medical resources by state at the following link.
http://www.disabilityinfo.gov/digov-public/public/FindSL.do?categoryId=137

MedlinePlus is the National Library of Medicine Web site designed to help you research your health questions. You can find a list of financial assistance resources at the following link.
http://www.nlm.nih.gov/medlineplus/financialassistance.html

Medicaid waivers are state-run programs that use federal and state funds to pay for health care for people with certain health conditions. In some states, families can apply for a medicaid waiver that waives the family income and looks only at the disabled person's income. This allows people who would otherwise be ineligible for Medicaid to receive medical care. Most states have some type of Medicaid waiver program. To find out more about Medicaid waiver programs in general, as well as specific state programs, visit the Family Voices Web site, a nonprofit organization that aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities:
http://www.familyvoices.org/pub/hcf/ma-kbw.pdf 
http://www.familyvoices.org

To find more information about state-specific Medicaid waiver and demonstration programs, visit The Centers for Medicare and Medicaid Services Web site.
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/08_WavMap.asp
http://www.cms.hhs.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp

The Georgetown University Health Policy Institute has written a consumer guide for getting and keeping health insurance for each state and the District of Columbia. These consumer guides are available on the Health Policy Institute’s Web site and are updated periodically as changes in federal and state policy warrant.
http://www.healthinsuranceinfo.net/

Health Care Choices provides information to the public on selecting and using various types of health insurance and managed care plans.

Health Care Choices
P.O. Box 21039
Columbus Circle Station
New York, NY 10023
Toll-free: 800-368-5779
Web site: www.healthcarechoices.org

Last updated: 6/5/2009

How can I learn more about participating in clinical trials at the National Institutes of Health?

Clinical trials are medical research studies in which people participate as volunteers. They are a means of developing new treatments and medications for diseases and conditions. There are strict rules for clinical trials, which are monitored by the National Institutes of Health (NIH) and the U.S. Food and Drug Administration. Some of the research studies at the NIH Clinical Center involve promising new treatments that may directly benefit patients. The Clinical Center does not charge patients for participation and treatment in clinical studies conducted at the NIH.  In certain emergency circumstances, you may qualify for help with travel and other expenses.

You can search a database of clinical trials being conducted by the NIH at the Clinical Center in Bethesda, Maryland at the following link. You can also contact the Patient Recruitment and Public Liaison Office directly at 1-800-411-1222 to speak with a specialist, who can help you determine if your husband is eligible for any clinical trials.
http://clinicalstudies.info.nih.gov/ 

In addition, the NIH through the National Library of Medicine has developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies.  You can search this database to find clinical trials at the NIH Clinical Center as well as federally and privately supported trials being conducted at universities and medical centers throughout the United States and around the world. To find clinical trials, click on the link above and type the disease name as your search term.

There is a study titled "Cartilage Autograft Implantation System (CAIS) for the Repair of Knee Cartilage Through Cartilage Regeneration" that may be of interest to you. Click on the study title to learn more. Review its "eligibility" criteria to determine its appropriateness. Use the study's contact (at the bottom of the page) to obtain additional information).

You can check these sites often for regular updates.

If your husband is interested in enrolling in a clinical trial, he can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
http://clinicaltrials.gov/ct2/info/understand

A tutorial about clinical trials for cancers that can also help answer your questions can be found at the following link from the National Library of Medicine/Medlineplus: http://www.nlm.nih.gov/medlineplus/tutorials/cancerclinicaltrials/htm/lesson.htm

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases (ORD), National Institutes of Health.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8

Last updated: 6/5/2009

References