This summer, we witnessed countless demonstrations on the health care debate across the country. The media has broadcast and written about impassioned pleas from conservatives and liberals alike, each swearing, with an alarming level of certainty, that their way is the only way. As we enter the fall and as Washington returns to work, Americans must ask themselves what really matters when it comes to reform. From my standpoint, while I think it’s a good thing the country is discussing much-needed health care reform, there is one important element missing from this enthusiastic debate. The patients. Individual Americans, and their best interests, are, or at least should be, at the core of any health care dialogue. Some will be much more affected than others, regardless of what the makeup of the final language that is passed.
Sadly, Congress does not seem to see our faces or hear our voices when they decide to include this or discount that in their 1,000 page bill. Rather, Washington seems to be listening to special interests that have relied on their deep pockets to air millions of dollars in advertising that promotes their views, while individuals get lost in the shuffle. The need for reform is real. The United States has the highest prescription drug spending in the world – $286 billion last year alone. And yet, prescription drug use has fallen for the first time in a decade. Is it any surprise when the average price of brand-name pharmaceuticals rose more than eight percent in 2008? In these tough economic times, many simply cannot afford their medication. According to a recent study conducted by Teva Pharmaceuticals, one in five Americans is cutting back on health care, even skipping doses of medication due to their economic hardships. The struggle is most acute for individuals dealing with some of the most debilitating diseases such as Parkinson’s, Alzheimer’s and other rare disorders, the biologic treatments for which can cost more than $100,000 a year. (Learn more about patients facing these costs here.)Unlike traditional drugs, these “biologic” medicines are derived from living organisms. While these expensive therapies have cheaper, generic counterparts in Europe, there are none in the U.S. This is because Congress has not approved a pathway for the approval of generic biologics as they have for traditional drugs. Even though the U.S. Food and Drug Administration (FDA) has repeatedly said they have the scientific expertise to review the safety and efficacy of so-called “biogenerics,” patients who need these often life-saving treatments still do not have the option of taking a cheaper, generic version. And we may have to wait more than a decade for that to change. My family and I know this all too well. I’ve spent half my life waiting for a medicine that could treat my rare blood condition, Paroxysmal Nocturnal Hemoglobinuria (PNH), a devastating disorder which causes the rapid destruction of red blood cells.As a result, PNH patients are at great risk for blood clots and anemia. Over the last two decades, I exhausted all my medical options. Nothing worked. I did what anyone would and persevered. I went on with my life – I got married and had two wonderful kids. And finally, in 2007, my patience and prayers paid off. A new drug called Soliris was approved by the Food and Drug administration as the first treatment for PNH. It made me feel like a new man. But in just two years, that optimism could turn to disaster. Soliris is a biologic – and has a price tag of $389,000 a year. In 2011, I will hit the cap limit on my insurance. At that time, I will have to decide whether to switch to my wife’s insurance plan and personally pay a third of my salary every year for the medicine that keeps me alive, or stop taking the medicine and face the debilitating consequences.It is a tough choice and one I do not think anyone should ever have to make, especially when there is no relief in sight.We need to shift the focus of the health care debate to what we can do as a country to make drugs more affordable and accessible. One step forward would be to agree upon a biogeneric drug approval pathway that could yield more affordable versions of biologic medicines in a manner that promotes competition and innovation of new drugs.One proposal, supported by big drug companies, seeks to maximize the length of monopoly status a drug has in the market, while people like me wait and wait. Another, introduced by Congressmen Henry Waxman and Nathan Deal and supported by President Obama, AARP and other groups representing millions of everyday Americans would introduce generic competition more quickly, balancing both access and incentives for innovation.I am part of Teva’s Year of Affordable Healthcare campaign. The on-line initiative is finally giving my voice and the voices of other Americans a way to be heard. I’m doing my part to inform people about the challenges people like me face every day as Congress puts the interests of business ahead of the interests of patients. It’s time for them to stop and listen. Allowing biogenerics to come to market in my lifetime would be a good start. Rob Day is a featured patient in the “Five vs. Twelve” campaign, part of the Year of Affordable Healthcare. He is a graphic designer in Port Huron, Michigan.