Precision Medicine: What I Want

If I volunteer my data, I want the results back–fast. I want to short-circuit the lengthy dissemination of research results currently in place. I don’t just want my data to benefit future generations. I want it to benefit me, as soon as possible.

I want privacy. Explanations that data cannot truly be safeguarded are not good enough.

I want to be able to take action based on what I learn about my genome. I want protections beyond GINA, particularly for life insurance and disability insurance.

I want risk reducing surgeries to be covered by insurance companies in the event of a positive BRCA diagnosis. Right now, they aren’t required to cover it.

I want genetic testing on demand, with second opinions available, and covered by insurance.

I want medical literacy programs, so that patients can fully engage, have truly informed consent, and make good health decisions based on big data. I want doctors to be well educated about genetic issues.

I want far greater recognition of the ways that socioeconomic status effects access to data and healthcare. I want all people to benefit from volunteering data, regardless of socioeconomic status. I don’t want our data making corporations rich while average Americans can’t afford the innovations made from that data.

I want universal healthcare. Economic inequality is the number one public health issue facing Americans right now. There is a very real danger that the masses will volunteer their genomic data but not be able to afford the medical innovations that result from that data. We cannot allow precision medicine to become the healthcare of the rich.

I want genomic data to be shared, not hoarded by corporations as Myriad Genetics has done in the past.

I want to look at the leadership of precision medicine and see more women, more ethnic minorities, more patient advocates. I want women and ethnic minorities to be well represented in the one million volunteer cohort.

I want clear, accessible pathways for patient involvement in shaping precision medicine. I want to be included. I don’t want to be an afterthought.¬†I want to help shape the future of American healthcare.

What do you want?

 

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.