How to Access Personalized Medicine

Personalized medicine is treatment tailored to each patient, which increases your chances of fighting and surviving certain diseases with fewer side effects. Unfortunately, 66 percent of Americans say they have never heard of personalized or precision medicine. 
And yet, one in every four new drugs approved by the Food and Drug Administration are considered personalized treatments.

If you are not receiving these treatments, you are missing out on the latest advancements in health care. We are moving away from the “one size fits all” approach of medicine based on population averages to treatments that are based on the unique characteristics of your disease. You are more than a number. Your health care should reflect that.

How do you access personalized medicine? If your doctor does not offer it, you may need to advocate for yourself and your loved ones.
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This guide is intended to help you find personalized care from diagnosis through treatment.

01

Selecting a Doctor

Whether you’re newly diagnosed or managing a chronic condition, 
it is important to choose a doctor who is aligned with 
your values and who is willing to discuss personalized medicine.

Questions to ask

I’m worried about a condition that runs in my family. Could you help me determine if the cause is genetic?

Do you have someone who can help me understand?

Do you routinely offer genetic testing and targeted treatments to your patients?

Resources

How to choose a doctor I can talk to

Preparing for your first visit

Genetic testing: What you should know

02

Receiving a diagnosis and getting initial treatment

In order to make a diagnosis, your doctor may order a series of blood 
and imaging tests. Depending on the results, you might be diagnosed with 
a specific disease or condition. Typically, the progression, or stage, 
of your illness will guide the doctor on if your first treatment will be 
standard or experimental. This may be an ideal time to get a second opinion, depending upon your diagnosis and proposed treatment plan.

Questions to ask

How often does the treatment you’re recommending cure or successfully manage this condition?

Could genetic testing be used to guide possible treatment options and potential drug responses?

I would like to get a second opinion before committing to a treatment plan. Can you help to facilitate that?

What financial assistance options are available?

Resources

Genetic Testing: What you should know

Can a second opinion make a difference?

Understanding health insurance

03

Following up on initial treatment

Your doctor will assess how well your first treatment worked. At this stage, you may be cured, see some improvement, or have no response to 
the treatment. If you have no response, a doctor will typically offer other treatment options to you. If your illness has progressed or remains 
unchanged during this time, ask about personalized treatment options.

Questions to ask

Before trying other treatments, I’d like to pursue genetic testing to understand what is driving my illness. Can you facilitate that for me?

If I change medicines, what is the likelihood of a cure or remission?

How will this new treatment impact my quality of life?

Can you recommend a genetic counselor?

Resources

When the first treatment doesn’t work

How to find a genetic counselor

Finding care when uninsured

04

Receiving additional treatment and/or diagnostic testing

Sometimes other treatments don’t work, and sometimes other treatment options aren’t available. It is also possible that your diagnosis led 
directly to additional testing. If you have not done so already, ask to speak with a genetic counselor to formally request genetic testing. It is 
important to call your insurance company to learn about the coverage 
and provider requirements for these services.

Questions to ask

What is the likelihood we’ll find something?

Will my insurance cover the cost of testing? How much will I pay?

What treatments are suggested by my testing and are they covered by my insurance?

Are there clinical trials we should explore?

Resources

Will my insurance cover the costs of genetic testing?

Clinical trial finder

What do the results of genetic tests mean?

05

Following up on your advanced treatment

By now, if there is a genetic component to your disease, your genetic testing results have been used to guide your treatment plan. Your doctor will 
assess how additional lines of treatment are working. This process may occur many times over until your illness subsides, all treatment options 
have been exhausted, or your desire to continue treatment diminishes.

Questions to ask

What are the risks/benefits/alternatives to each new treatment?

Is my quality of life being considered?

Are there other non-medical options available?

If I don’t want to continue treatment, is there palliative care (relief from symptoms of the disease) offered?

Resources

Pharmaceutical assistance program

Understanding unapproved use of approved drugs “off label”

What is palliative care?

06

Continued Monitoring

If your disease is chronic or recurrent, you will likely have a lasting relationship with your doctor. This is why it's important to find the right person 
to manage your care based on your own values. And remember, when managing your health, you are your own best advocate.

Questions to ask

Even though my disease is cured (or under control), why do I still have anxiety?

What kind of care should I expect after my treatment?

Can you suggest more resources or a support group that might help me?

Resources

After treatment ends:
Tools for the post-treatment cancer survivor

Questions to ask your doctor once treatment is finished

Support groups: Make connections, get help

Information about insurance can be found here.