The Voices Campaign is HFA’s grassroots advocacy initiative aimed at raising general public and legislator awareness of the bleeding disorders community through personal stories from affected individuals and their families. In the approaching national debates regarding health care reform, HFA wants to ensure the bleeding disorders community is heard, and through the Voices Campaign, members of the community can learn how to better advocate for the community through effective sharing of personal stories.
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Warren Ingram
Pineville, North Carolina
Letter to the Editor and to the Citizens of North Carolina:
Advocate for yourself and for others when it comes to Health Care in America
I am a person who is happy beyond words to see action taken to reform healthcare. I am advocating protecting, serving and improving the rights of people regarding healthcare. Everyone has a healthcare war story to share, validating why it is so important to reform healthcare now. I would like to share the experiences I have had in dealing with the healthcare system.
I live with several chronic illnesses that require extensive care and treatment that are very costly. I have hemophilia, a bleeding disorder that costs me in excess of $50,000 per month to treat. I can honestly say that without this medication, life for me personally would not be sustainable. Because of extensive bleeding into my joints, specifically, my hips and knees I have had to have both hips and both knees replaced. I have lived with this condition since birth. Early on in my life, I was able to receive the treatment that I needed because my father was in the military. For many with hemophilia the ability to attain treatment because of a lack of insurance results in permanent joint damages and even death. In my adult years, in spite of my chronic illness, I was determined to be a member of society contributing to humanity as well as being a tax paying citizen through employment. I understand that we pay taxes for a number of reasons, one being to support programs to help those less fortunate than me.
I wanted to live the American dream, have a job, a family and be self supporting. This was not an easy task, because when employers found out that I had an expensive chronic illness they would find a way to deny me employment, either by stating that my illness would cause me to miss too much work or I would be denied insurance for a pre-existing condition. One such experience was with a Fortune 500 company, who hired me, but then later denied me employment after being assessed by their medical department, stating that the hemophilia would prohibit consistency of working days. I was forced to seek legal council to gain employment at this company. As a result I was hired after 6 months of deliberation and was employed with this Fortune 500 company, where I was a valued employee and attained many recognitions and accommodations, including recognition for perfect attendance. I also received four promotions during my time with the company and remained with the company for 18 years.
During the 18 years I worked for the Fortune 500 Company I was very happy that I was a working taxpaying citizen. In 1985 I was confronted with another chronic illness, HIV. I contracted HIV from contaminated factor VIII that I was using to treat the hemophilia. I must confess this was devastating for me and my family. I felt like giving up right there, throwing in the towel and going on disability. I chose to stay positive and move on. I accepted this tragedy as just one of those things that could not be helped. But 8 years later it came to light that the Pharmaceutical companies that manufactured factor VIII products had known since the early to middle 80’s that much of the product being manufactured and given to people with hemophilia was contaminated with the HIV virus. This was a turning point in my view of how I would approach and I was determined to advocate for myself and others with regard to healthcare issues and no longer leave it up to the status quo.
Beginning in 1992, I along with many others from the hemophilia community took action to reform how the blood supply would be made safer and that the Pharmaceutical companies and Federal Government be held accountable for a lack of oversight and failure to inform the hemophilia community that the factor VIII medication was contaminated. Through advocacy we as a community made the Federal Government and the Pharmaceutical companies accountable to the consumers they serve through the Ricky Ray Hemophilia Relief Act Fund Act and through a revealing Institute of Medicine Report resulting in consumer reorganization on the Blood Products Advocacy Committee and Advisory Committee on Blood Safety and Availability.
I am currently on disability and have been since Nov 2002. I would like to go back to work and be a tax paying citizen once more, but because of the way the healthcare system is set up at the moment it does not allow anyone with a chronic illness to work and obtain health insurance. You can have insurance, but not work gainfully. I think it makes more sense to let an individual make a good living, pay taxes and be able to buy health insurance with a reasonable premium that is affordable. I want to go back to work and be able to buy affordable health insurance. Instead it seems like the private insurance companies want to avoid me and make me a burden to the government and shifting the cost of my care to the government.
So, here we are in 2009 as a nation concerned about the future of healthcare in America. It is time for the city of Charlotte, the State of North Carolina, and the citizens of the United States, to come together as one voice and advocate for each other and not let the status quo dictate what the future of the healthcare system in America will be.
We need positive change! The system is broken! It needs to be fixed and there must be the fair shouldering of cost and not simply shifting the costs upon the government, thus taxpaying citizens who are struggling to make ends meet. Let the Pharmaceutical and insurance industry shoulder more responsibility instead of fattening their golfers.
Here is a Bill in the Senate that you can support and push for at the federal level that will benefit all Americans as part of the “Expanding Health Care Coverage: Proposals to Provide Affordable Coverage to All Americans”
Please ask your Senator to support S.442, the Health Insurance Coverage Protection Act, legislation which would set minimum lifetime caps on private insurance at $10 million. Chairman Baucus and Ranking Member Grassley of the Senate Finance Committee proposed the elimination of lifetime caps altogether furthers this policy. Individuals with chronic diseases and disorders must not be impeded in accessing necessary health care nor should they be impoverished with unreasonable lifetime or annual limits on benefits and unreasonable out-of-pocket expenses.
Many Pharmaceutical Companies, Chronic Illness organization, Advocacy Organizations and millions of Americans with chronic illnesses and conditions are committed to working to ensure that this option is part of the final reform package.
Another bill in the Senate that you can support and push for at the federal level that will benefit all Americans with pre existing conditions “S. 623, The Pre-existing Condition Patient Protection Act of 2009”. S. 623 would amend title I of the Employee Retirement Income Security Act of 1974, title XXVII of the Public Service Act, and the Internal Revenue Code of 1986 to prohibit preexisting condition exclusions in group health plans and in health insurance coverage in the group and individual markets.