Precision medicine: genetic data doesn’t mean shit if you can’t afford to use it.

Image: US-POLITICS-HEALTH-OBAMA
Obama just unveiled an ambitious “precision medicine” plan and the White House is diving into precision medicine head first: epatients! genomics! big data! sexy sexy science! I guess it’s no surprise that Obama would want to jump on that bandwagon, but I’m skeptical as ever.

I’m not a fan of the idea that more technology and more bureaucracy is inherently better. BRCA+ women often get held up as examples of the benefits of personalized medicine. However, genetic knowledge doesn’t automatically give individuals the tools they need to manage their risk. In 2015, the best HBOC women can do to prevent cancer is choose among variations of the “slash/burn/poison” methods of yesteryear. While BRCA mutations have been fairly well studied for over twenty-five years, women’s options for preventing hereditary cancers have not improved much.

Even within the limits of the surveillance, chemoprevention, and risk-reducing surgery triad, many women cannot afford genetic testing or risk management. Multiple members of my own family have been unable to get tested for our particular BRCA mutation because they can’t afford health insurance, not even Obamacare, despite being employed. If my relatives scrounged together enough money to pay for genetic testing out of pocket, then they certainly wouldn’t be able to afford risk management in the wake of deleterious test results.

There are a lot of systemic problems with healthcare in the United States that need to be resolved now. Many Americans still don’t have affordable health insurance, paid paternity leave, access to short and long term disability, etc.–basic human rights that are taken for granted in Europe. Something as quotidian as childbirth often sends Americans into massive debt, never mind a major heath issue like a cancer diagnosis or a chronic illness.

At the moment, I am still suffering the financial fallout of choosing prophylactic mastectomy. And “suffering” is not an exaggeration here. I’ll be paying off the medical debts I incurred with PBM for at least two years, even though I have a good job and relatively good health insurance. In a lot of ways, I’m lucky that I could take on and manage this debt: I had access to exceptional doctors and an overwhelmingly positive experience. It’s a pretty sad state of affairs when medical debt is a privilege.

To me, these socioeconomic issues are far more pressing than personalized medicine. Massive reforms are long overdue and socioeconomic inequality in the United States is getting worse and worse. What good is genomic data if patients don’t have the socioeconomic means to put it to use?

Obama’s precision medicine plan reminds me of George W. Bush’s equally ambitious global AIDS plan, another public health initiative that was unveiled towards the end of a second presidential term. In theory, Bush Junior’s AIDS initiative sounded fantastic: billions of dollars directed at fighting AIDS in Africa, the massive distribution of AIDS drugs, new condom promotion programs, etc. In practice, however, Bush’s AIDS initiative was rushed and poorly implemented. The phrase “pissing into the wind” comes to mind.

Precision medicine is an enormous undertaking that requires careful planning. I don’t have much faith in the ability of government bureaucracies to efficiently plan and execute something so socioeconomically and ethically fraught. If Obama’s precision medicine plan is successful–and it will be a long time before we can adequately judge whether or not it is–then there are still massive hurdles to improving conditions for patients on the ground.

Maybe Obama’s precision medicine is the first step towards giving people better options. For now, we should be wary of getting caught up in the hype of precision medicine. Yes, it could lead to some great things for the HBOC community, but we need to recognize the immense challenges it poses.

If anything good is going to come out of this initiative, then BRCA+ advocates are going to have to stay on their toes, push hard for patient input, and lobby for improvements in healthcare access–that means, vehemently supporting universal healthcare, paid paternity leave, and other socioeconomic improvements  to healthcare access for the poor, the working class, and the shrinking middle class.

After all, genetic data doesn’t mean shit if you can’t afford to use it.

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5 thoughts on “Precision medicine: genetic data doesn’t mean shit if you can’t afford to use it.

  1. I think this criticism is more than necessary, but have to say that I see an opportunity in Big Data, especially because of grassroots data collection movements like Free the Data. If we can insist on open source approaches to data collection, we really might use this to advance and explore cures or treatments that do not cost much (like aspirin, for example), which are not being studied precisely BECAUSE they do not benefit big pharma or generate profit for anyone. So I totally agree that it means BRCA activists and the community need to be more involved than ever at this juncture — this is our opportunity to make a difference!

  2. You bring up great points – and I agree with KJ that the criticism is necessary. I especially like the reference to the Bush Administration and AIDS.

    That said, I think it’s easy to sit on the sidelines criticize – and as the skeptic you become more a part of the problem than part of the solution. We saw that in spades with MCK’s recommendation for universal BRCA testing. Everyone wants to smugly point out why things won’t work, rather than work on things that will work. And so….nothing ever changes.

    With the cost of gene sequencing technology falling faster than Moore’s law, genomic medicine actually does have the chance to become affordable. The key is building a commons for the data, and then to build tools on top of that commons to make the data actionable for clinicians. NIH funding towards genomic medicine, and bringing data sharing to the national agenda is at least a first step. If you don’t like the slash/burn options that women with BRCA have today – I want to know what you think the solutions are? Are we supposed to let private companies figure everything out? Or just keep things they way they are?

    I have been invited to the NIH to offer my feedback as someone with BRCA …and would like for some constructive input to share with them when I go. I have 8-10 minutes to say something about this initiative, and looks like I’m the only 1 of 2 patient speakers in the room.

    If you have something you would like to say, then please comment here: https://docs.google.com/document/d/1Kn7kmgps1BoYugnGWXvWv-QHEPAtxEq_rCJxumtU4SI/edit?usp=sharing

    1. It is so not easy being the skeptic! Everyone wants to shoot the messenger.

      You’re right that genomic medicine is becoming affordable quickly. It’s going to happen, but just because it’s happening doesn’t mean that it’s going to benefit everyone or even benefit the people whose data is being used. Institutions like the NIH are inherently political, and they can/do systemically re-inscribe social inequality.

      In some ways, this precision medicine hubbub is giving me a sense of deja vu. BRCA testing was the wave of the future in the 1990s; it was going to revolutionize the treatment of breast cancer, prevention, and American medicine. Did it? Well, sort of. It certainly made Myriad rich.

      I guess I’m saying that there are a lot of mediating factors between the rhetoric of scientific advancement and the lives of individual patients. Yes, we’ve got to start somewhere. But we need to be wary of getting so caught up in the hype that we allow ourselves to be exploited–god knows precision medicine is ripe for exploitation–and fail to benefit from any advances our data may facilitate.

      I do have concrete suggestions, but I’m going to gather my thoughts and put together another post in a few days. In the meantime, though, I am really glad to hear that the NIH is calling on you for feedback. I can’t think of anyone better for the job.

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