HIV-Positive People Need Healthcare Reform: Read Stories from the Field

Congressional Democrats are getting cold feet on healthcare reform legislation.  Calls are needed NOW to urge Congress to not delay in enacting meaningful, comprehensive health care reform for the U.S. 

People with HIV need healthcare reform!  Hear from one person, in his own words:

I am a person living with AIDS. I also have bipolar disorder, and must take a number of medications for that problem in addition to my AIDS medications.

I currently am surviving on Social Security Disability Insurance, but that is barely sufficient to get me by. I last worked in August 2007, and of course I signed up for COBRA at the time. Because I was on disability, COBRA allowed me to extend coverage by 11 months, but at the same time it allows providers to increase premiums by 50%. Of course the insurer did so, and now I'm paying $750 per month -- nearly half of my SSDI benefits -- for insurance.

This does not include the co-pays I must pay for doctor visits and prescription medications. This coverage comes to an end in December. However, I do not qualify for Medicare until June 2010. Therefore, I will be without coverage from December 2009 to June 2010. I will have no access to medications; I will have no access to health care.

Consequently, my health will suffer a serious decline from December 2009 to June 2010. Because of the way HIV interacts with antiretrovirals, the therapies that currently work for me may no longer work once I am covered by Medicare. I have looked at the future costs of my medications under Medicare Part D, but even with that coverage I will be paying over a third of my disability income on prescription medications.

I ask for five things: (1) End the two-year waiting period between the time a person is declared disabled and the time he or she is entitled to Medicare benefits; (2) Enact meaningful changes to the Medicare prescription benefits coverage so that I will not have to pay an insurmountable amount of money for the medications which keep me alive; (3) Ensure that sufficient funds for Ryan White programs (ADAP, HOPWA) are allocated; (4) Include a public health insurance option at a reasonable fee in any health care reform plan; and (5) Prohibit insurance companies from refusing to provide coverage of "pre-existing conditions".

I am hopeful that I will recover to the point that I will once again be able to be a productive member of society and no longer need to collect disability payments. But if I do not receive health care or medications for even seven months, that is likely to be impossible. Also, if insurance companies are allowed to refuse to provide coverage for my "pre-existing conditions" that will impede my ability to return to work.

Nelson
Mississippi

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*Please note that actual names have been changed to protect individual's confidentiality.  Media interested in interviewing HIV-positive people about health-coverage issues should contact AFC Communications Director Johnathon Briggs at jbriggs@aidschicago or 312-334-0922.