Many of the people who contract Hepatitis C are able to maintain a high quality of life for many years. Some, however, face significant symptoms that prevent them from performing any form of work activity whatsoever. This results in a lack of income compounded by significant medical expenses. Fortunately, Social Security Disability benefits may be able to help. If you've been diagnosed with Hepatitis C and are wondering if you qualify for benefits from the Social Security Administration (SSA), this is the information you've been looking for.
JOIN HEPATITIS C ADVOCATES UNITED!
Your voice is needed!
To join Hepatitis C Advocates UNITED!, send an email to firstname.lastname@example.org with “Subscribe” in the subject field. In the email, please put your first name (and last name, if you are comfortable) and your city/state.
The numbers are staggering. There are over 4 million Americans currently infected with the hepatitis C virus. Most of them are unaware that they have the virus.
Despite these statistics, the response from the federal government to this epidemic has been dismal. Funding for viral hepatitis programs has remained flat, the President has refused to recognize May as “National Hepatitis Awareness Month,” and legislation to mount a comprehensive national HCV education and testing campaign has stalled.
It is time that our elected representatives hear from us directly that we expect national leadership to fight HCV. Join Hepatitis C Advocates UNITED!, a new grassroots coalition formed by the Hepatitis C Appropriations Partnership (HCAP) and the National Hepatitis C Advocacy Council (NHCAC). This coalition of individuals and organizations around the country will work together to create grassroots campaigns aimed at educating Congress and the Bush Administration about the need for adequate funding and legislation to combat the HCV epidemic. We’ll also share information and strategies about state-level issues.
The first three campaigns will focus on:
Other issues and campaigns will be determined by members of the coalition.
Be a part of this movement! To join Hepatitis C Advocates UNITED!, send an email to email@example.com with “Subscribe” in the subject field. In the email, put your first name (and last name, if you are comfortable) and city/state. We will communicate through a moderated listserv and monthly conference calls.
Hepatitis C Advocates UNITED! is a national, grassroots network of individuals and organizations fighting for increased funding for hepatitis programs and legislation to mount a comprehensive federal effort to fight the disease. We design grassroots strategies to educate our elected representatives about the need for adequate HCV funding and policies, including action alerts, sign-on letters legislative meetings, media activities, and other campaigns. We also share information and strategies on state-level issues and campaigns. We communicate through a moderated listserv and monthly conference calls. Hepatitis C Advocates UNITED! was formed by the Hepatitis C Appropriations Partnership (HCAP) and the National Hepatitis C Advocacy Council (NHCAC).
The FDA wants to know about side effects associated with interferon and/or ribavirin or other medications, even if the patient has finished taking the medication. If you had a problem, it should be reported to the FDA.
They can be contacted at 1-800-FDA-1088 (1-800-332-1088).
The number will provide a menu of options, and you will be asked to leave your name & address so that a reporting form can be mailed to them, or you can use an on-line reporting form. The form and more info on MedWatch is at:
They also have an Office of Special Health Issues, which answers consumer questions about the Food and Drug Administration's activities related to HIV/AIDS, cancer and other special health issues. They encourage patient participation in medical decision making, and invite patient representatives to participate in its Advisory Committee meetings to discuss medical products for the treatment of serious or life-threatening diseases.
People can contact the Office of Special Health Issues at:
Office of Special Health Issues
Food and Drug Administration
Parklawn Building, HF-12
5600 Fishers Lane
or see their website at: http://www.fda.gov/oashi/home.html
How private is my medical information?
At first glance, medical records appear to be one of the few truly confidential areas in our lives. Laws in many states, including California, and the age-old tradition of doctor-patient privilege seem to make it difficult for others to gain access to medical records. But the laws contain exemptions. And the right to confidentiality is often lost in return for insurance coverage. In short, you may have a false sense of security.
What do my medical records contain?
Medical records are created when you receive treatment from a health professional such as a physician, nurse, dentist, chiropractor or psychiatrist. Records may include your medical history, details about your lifestyle (such as smoking or involvement in high risk sports), and family medical history. In addition, your records contain laboratory test results, medications prescribed, and other reports which indicate the results of operations and other medical procedures.
Who has access to my medical records?
Your medical information is shared by a wide range of people both in and out of the health care industry. Generally, access to your records is obtained when you agree to let others see them. You have probably signed "blanket waivers" or "general consent forms" when you have obtained medical care. When you sign such a waiver, you allow the health care provider to release your medical information to insurance companies, government agencies and others.
Is there any way to protect the privacy of my medical records?
Currently, there are no comprehensive laws regarding medical records privacy. Here are some methods which may limit others' access to your medical records:
How do I get access to my own medical records?
In California and about half the states, health care providers must allow patients (or their representatives) to access and obtain copies of their own medical records. (California Health and Safety Code §123100). This includes doctors' offices, hospitals, mental health facilities and clinics. Generally the health facility must charge a "reasonable" fee for copying records. If you received care in a federal medical facility, you have a right to obtain your records under the federal Privacy Act of 1974 (5 USC §552a. Web access at www.usdoj.gov/foia/privstat.htm).
Most medical offices ask that you make your request in writing. If the health care provider will not release your records, ask for a written letter of denial. Then contact a patients' rights group, the local medical society, the state medical board or an attorney for further assistance. Generally, a request for disclosure may be denied if the health care provider believes the information will be harmful to the patient. In that case, the health care provider is usually required to disclose the record to a physician of the patient's choice. Denial of health records most often occurs with mental health records.
The future of medical records privacy
There is much debate over the future of the health care industry. Instead of your doctors each keeping their own records, there is likely to be a central computer file with your complete medical history stored in a regional or national database. Some say this will make the system more efficient, help you keep track of your personal information, and allow you to monitor your records for mistakes. However, privacy advocates are concerned about secondary uses of this medical information, employer access and unauthorized access.
The 1996 federal Health Insurance Portability and Accountability Act mandates a national healthcare ID number for all citizens. (Web: http://aspe.os.dhhs.gov/admnsimp/pl104191.htm) It also calls for the development of a federal privacy protection law by August 21, 1999, or in its absence, regulations adopted by the U.S. Department of Health and Human Services. There is considerable debate surrounding these and other issues. If you have an opinion or concern, contact your state and federal legislators.
For more information
A leader in fighting for patients’ privacy rights is the National Coalition for Patient Rights
405 Waltham St., Suite 218
Lexington, MA 02173
Phone: (781) 861-0635
The Web site of the American Health Information Management Association includes a white paper on medical records privacy and other useful information, http://www.ahima.org/.
Contact AHIMA at 919 N. Michigan Ave.
Chicago IL 60611-1683.
Phone: (800) 335-5535.
Contact the Privacy Advocate of the U.S. Dept. of Health and Human Services regarding privacy-related programs of the DHHS: 200 Independence Ave., SW, Washington, D.C. 20201.
Phone: (202) 690-5896.
The Health Privacy Project of Georgetown University is a resource for public policy information, especially federally-mandated privacy protection due by August 21, 1999.
The Web site includes information on federal privacy legislation.
For health privacy-related disputes in California, contact the county medical society or the Medical Board of California at (800) 633-2322.
For information about access to health records, visit the Web site of the California Medical Association, http://www.cmanet.org/ (look for "Free Legal Information").
Privacy Rights Clearinghouse
1717 Kettner Ave. Suite 105
San Diego, CA 92101
Voice: (619) 298-3396
Fax: (619) 298-5681
Genentech Patient Assistance for
Pegasys & Copegus | 888-941-3331
Merck Patient Assistance for Victrelis
Peglntron & Rebetol