Major U.S. Treatment-Access Problems Likely: Inadequate Political Response

Summary: 2006 could be the worst year for U.S. access to HIV medical care since the development of lifesaving drugs. Our community needs to respond more effectively to this threat.

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Comment by John S. James

Medicaid cuts and other problems could make 2006 the worst year for U.S. treatment access since lifesaving drug combinations became available, according to experts quoted in an October 2005 article in HIV Plus magazine, available online. [1] Earlier in 2005 Congress agreed to cut $10 billion from Medicaid over five years. And now Republicans are trying to make additional huge cuts in non-military Federal spending to balance the cost of rebuilding most of New Orleans after hurricane Katrina, when failure to maintain the levees led to flooding of 80% of the city.

The destruction from the storms is also causing huge medical problems as many people from the area cannot obtain and pay for treatment after their jobs, homes, and doctors' offices were destroyed. An estimated 21,000 people with HIV lived in the affected area. Leaders of both political parties in the Senate are trying to pass legislation to let people who lived there get Medicaid if they are poor enough to qualify, even if they are not aged, disabled, or in some other category. But a few conservatives, encouraged by the Bush administration, have refused to let the Senate vote on this measure. The more conservative House would probably block it as well. The objection is to the cost, about $9 billion, and the precedent of expanding Medicaid. An October 5, 2005 action alert from the Campaign to End AIDS is at
http://www.campaigntoendaids.org/site/c.fnJMKLNmFmG/b.1067107/k.7325/C2EA_Action_Alert.htm

[Note to Webmasters: please use simpler and more meaningful links when possible. And DO keep putting action alerts on the Web, instead of sending them by email only, so that people can more easily write and talk about them, and refer others to the latest version. Change the alert on your Web site when the situation changes; find ways to tell visitors what they can do now.]

People should realize that each billion dollars of medical care denied by Medicaid would cost much more to buy out of pocket. This is because private and public insurance companies make deals to keep prices down, while there is no such restraint on prices for the few who must pay for care themselves. The exact same service can cost you two or three times as much as an insurance company would pay (it is hard to get figures because real prices for U.S. health care are often kept secret or deliberately obscured). The result of this system is nominal prices that do not reflect any economic reality except that you may get trapped and have to pay them.

With Medicaid cuts, of course, poor people will not get the treatment they need. It is well known that tens of thousands of Americans die every year due to lack of health insurance, and the cuts now being made and proposed will cause more to die.

We should also pay more attention to the absurd results of co-pays and other "moral hazard" charges -- intended less to raise revenue than to reduce the use of medical care, supposedly to prevent abuse and therefore save money. But with rare exceptions people do not take medical treatment for fun -- and patients cannot safely second-guess their doctor's recommendations, making their own decisions on which are necessary and which are frills. When co-pays work as intended, they "work" by getting patients to avoid medical care, or to not fill some or all of their prescriptions -- resulting in treatment that could be worse than useless for the individual, while breeding resistant viruses and bacteria for the community.

Probably most patients do not plan and ask the doctor in advance which medicines to stop if they cannot afford them all, so this process has no medical input or supervision. Doctors often could not make these decisions anyway, as nowhere in drug design, discovery, development, approval, or regulation is treatment modification by arbitrarily dropping some pills due to affordability or co-pays considered.

The real effect of many cost-sharing plans (especially those for the poor) is to ration medical care by social class, not medical need.

Political Mobilization: Not Enough Being Done

Some good work is being done to mobilize for sane policies on access to medical care [2] -- but not enough of it.

Too few organizations are working on the issue. And few have learned how to connect with people effectively, get them involved, and get things done. Washington-based groups are closest to Congress and other machinery of government, but usually speak to policy and other professionals. They often fail to give most people meaningful, coherent images and information they can use, and meaningful ways to act.

Failures of government happen for a reason. Washington is filled with inside games, signposts, symbolisms, score-keeping, etc. that mean nothing to 99% or more of the nation's population. It only takes a few days of working there to start relating to inside cliques and scenes that are meaningless to almost any constituency. Washington is out of touch because it works within an unreal world. And with billions of real dollars flowing through that world every week, generating enormous influence (about $1,500,000,000 per week for the Iraq war alone), Washington naturally responds more powerfully to corruption than to voters, information, national interests, values, or anything else.

Trained or experienced organizers know that people are usually best reached through existing groups; they want to act with their friends, or to meet new friends with shared interests. Issues that work to mobilize action are likely to offer people attractive, coordinated statements about who they are -- practical, effective, intelligent, helpful and loyal to their friends, and supportive of the overall public interest, for example. Supporters must have confidence that the campaigns they are asked to help have been carefully considered.

Leaders of our community need to do better in bringing together experienced organizers, strategy, ideas, media, money, and other elements necessary for success.

References

[1] A "Perfect Storm" Brews, by Bob Adams, HIV Plus magazine, October 2005.
http://hivplusmag.com/column.asp?id=686&categoryid=1&issue_emi=current&jt=0

[2] Here is a partial list of HIV-related links on organizing and advocacy for U.S. access to medical care. Let us know of others that should be added.
http://www.taepusa.org/index.html
http://www.campaigntoendaids.org/
http://www.tiicann.org/
http://www.housingworks.org/
http://thebody.com/ryanwhiteaction/
http://www.atac-usa.org/default.asp?ID=1
http://www.aidsaction.org/

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