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:
Securing the highest possible increase for viral hepatitis programs in
the final Fiscal Year 2008 funding bill.
Getting House and Senate co-sponsors for the “Hepatitis C Epidemic
Control and Prevention Act,” a bill that would establish a
comprehensive federal hepatitis C research and prevention program.
Contacting key officials of the Bush Administration and urging them to
provide an increase for federal viral hepatitis programs in the
President’s Fiscal Year 2009 budget.
Other issues and campaigns will be determined by members of the
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.
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 can be contacted at 1-800-FDA-1088 (1-800-332-1088).
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:
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.
1. Insurance companies require you to release your records before
they will issue a policy or make payment under an existing policy.
Medical information gathered by one insurance company may be shared
with others through the Medical Information Bureau (see below).
2. Government agencies may request your medical records to verify
claims made through Medicare, MediCal, Social Security Disability
and Workers Compensation.
3. The Medical Information
Bureau (MIB) is a central database of medical information. Approximately
15 million Americans and Canadians are on file in the MIB's computers.
Over 750 insurance firms use the services of the MIB primarily to
obtain information about life insurance and individual health insurance
policy applicants. A decision on whether to insure you is not supposed
to be based solely on the MIB report. Visit the MIB web site at
The MIB does not have a file on everyone. But if your medical information
is on file, you will want to be sure it is correct. You can obtain
a copy ($8) by writing to:
Medical Information Bureau
P.O. Box 105, Essex Station
Boston, MA 02112
or call (617) 426-3660.
4. Employers usually obtain medical information about their employees
by asking employees to authorize disclosure of medical records.
This can occur in several ways.
When medical insurance is paid by employers, they may require insurance
companies to provide them with copies of employees' medical records.
Self-insured businesses establish a fund to cover the insurance
claims of employees. Since no third party is involved, the medical
records that would normally be open for inspection by an insurance
company are accessible to the employer. Most large corporations
are self-insured. Unfortunately, the laws in only a few states require
employers to establish procedures to keep employee medical records
confidential. (For example, California Civil Code §56.)
According to the federal Americans with Disabilities Act (ADA, 42 USC §12101
et seq.), in workplaces with more than 25 employees: ADA text at
Employers may not ask job applicants about medical information
or require a physical examination prior to offering employment.
After employment is offered, an employer can only ask for a medical
examination if it is required of all employees holding similar jobs.
If you are turned down for work based on the results of a medical
examination, the employer must prove that it is physically impossible
for you to do the work required.
Violations of the ADA should be brought to the attention of the
U.S. Equal Employment Opportunity Commission (EEOC). The EEOC's
phone number is listed in the U.S. Government section in the white
pages of the phone book.
5. Your medical records may be subpoenaed for court cases. If you
are involved in litigation, an administrative hearing or worker's
compensation hearing and your medical condition is an issue, the
relevant parts of your medical record may be copied and introduced
6. Other disclosures of medical information occur when medical
institutions such as hospitals or individual physicians are evaluated
for quality of service. This evaluation is required for most hospitals
to receive their licenses. Your identity is generally not disclosed
when medical practices are evaluated. Occasionally, your medical
information is used for health research and is sometimes disclosed
to public health agencies like the Centers for Disease Control.
Specific names are usually not included with the information.
7. Medical information may be passed on to direct marketers when
you participate in informal health screenings. Tests for cholesterol
levels, blood pressure, weight and physical fitness are examples
of free or low-cost screenings offered to the public. Screenings
are often conducted at pharmacies, health fairs, shopping malls
or other nonmedical settings. The information collected may end
up in the data banks of businesses which have products to sell related
to the test. Use caution when participating in such screenings.
Ask what will be done with the information and who will have access
to the test results.
8. A tremendous amount of health-related information is found on
the Internet. Many Usenet news groups and "chat" rooms are available
for individuals to share information on specific diseases and health
conditions. Web sites dispense a wide variety of information. There
is no guarantee that information you disclose in any of these forums
is confidential. Use a pseudonym and a non-name specific electronic
mail address. Avoid registering your name on web sites.
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:
1. When you are asked to sign a waiver for the release of your
medical records, try to limit the amount of information released.
Instead of signing the "blanket waiver," cross it out and write
in more specific terms.
Example of blanket waiver:
I authorize any physician, hospital or other medical provider to
release to [insurer] any information regarding my medical history,
symptoms, treatment, exam results or diagnosis.
Edited waiver: I authorize my records to be released from [X hospital,
clinic or doctor] for the [date of treatment] as relates to [the
2. If you want a specific condition to be held in confidence by
your personal physician, bring a written request to the appointment
that revokes your consent to release medical information to the
insurance company and/or to your employer for that visit; you must
also pay for the visit yourself rather than obtain reimbursement
from the insurance company. To be especially certain of confidentiality,
you may need to see a different physician altogether and pay the
bill yourself, forgoing reimbursement from the insurance company.
3. Use caution when filling out medical questionnaires. Find out
if you must complete it, what its purpose is, and who will have
access to the information that is compiled. Also, before participating
in informal health screenings, find out what uses will be made of
the medical information that is collected. Use the same caution
when visiting Web sites and when participating in online discussion
4. Ask your health care provider to use caution when photocopying
portions of your medical records for others. Sometimes more of your
medical record is copied than is necessary.
5. If your records are subpoenaed for a legal proceeding, they
become a public record. Ask the court to allow only a specific portion
of your medical record to be seen or not to be open at all. A judge
will decide what parts, if any, of your medical record should be
considered private. After the case is decided, you can also ask
the judge to "seal" the court records containing your medical information.
6. Find out if your health care provider has a policy on the use
of cordless and cellular phones and fax machines when discussing
and transmitting medical information. Cordless and cellular telephones
are not as private as standard "wired" telephones. Because they
transmit by radio wave, phone conversations can be overheard on
various electronic devices. (See the Privacy Rights Clearinghouse
Fact Sheet No. 3, "Wireless Communications.")
Fax machines offer far less privacy than the mail. Frequently many
people in an office have access to fax transmissions. Staff members
at all levels of the organization should take precautions to preserve
confidentiality when sending and receiving medical documents by
fax machine. (See PRC Fact Sheet No. 12, "Checklist of Responsible
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
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
The 1996 federal Health Insurance Portability and Accountability
Act mandates a national healthcare ID number for all citizens. (Web:
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.
For help with the Americans with Disabilities
Act, call the nearest Technical Assistance Center, (800) 949-4232.
Web: http://www.pacdbtac.org/ or http://www.adata.org/
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